FOR UK PARLIAMENTARY INQUIRY INTO ME/CFS

Chronological list of documents relevant to the Inquiry authored by

Professor Malcolm Hooper, Eileen Marshall and Margaret Williams

7th November 2005

Most of the articles mentioned in this document are on the internet; all are
available from Malcolm Hooper, Emeritus Professor of Medicinal
Chemistry, Department of Life Sciences, University of Sunderland, SR2
7EE, UK.

Note that Myalgic Encephalomyelitis (ME) is listed in the World Health

Organisation International Classification of Diseases also as chronic fatigue
syndrome (CFS) and as PostViral Fatigue Syndrome (PVFS). In the US,
the disorder is sometimes known as Chronic Fatigue and Immune
Dysfunction Syndrome (CFIDS), whilst the current preference by some
international researchers is for the term Neuro-endocrine-immune
Dysfunction Syndrome (NDS), which they maintain more accurately
reflects the underlying pathology. It is important to be aware that this
disorder is not, as claimed by some psychiatrists, synonymous with chronic
unexplained fatigue (to which these psychiatrists unhelpfully refer as
“CFS”).

Introduction

Our views are already on record in a preliminary submission of 18th August

2005 prepared for this Inquiry (ME: Why No Accountability? A synopsis for
the UK Parliamentary Inquiry), but this short introduction will hopefully
emphasise the seriousness of the problem.

We submit that, for almost two decades, the beliefs and actions of a small but
influential group of UK clinicians and researchers from the discipline of
psychiatry have been responsible for not only a hindering of progress in the
understanding of the biomedical disorder myalgic encephalomyelitis (ME) and
for the consequent lack of appropriate NHS provision of services for sufferers,
but also for the psychiatric bias that, since 1987, has pervaded the UK medical
literature concerning this disorder.

We note that since psychiatry became fashionable, almost all conditions for
which no specific cause was instantly apparent have, in the first instance, been
labelled “psychiatric”, but that following scientific research, virtually all those
conditions proved to be organic in nature. The pontifications of the
psychiatrists at the time are still extant and now make amusing reading, but
presumably the unfortunate sufferers themselves were unamused. Since such
scenarios have occurred so frequently, one would imagine that by now, caution
in diagnosis would be automatic until scientific research had been exhaustively
pursued, but in the case of ME, the opposite has occurred: appropriate research
into ME has been made almost impossible in the UK, with researchers other
than psychiatrists being starved of funds; clinics that specialised in authentic
ME have been closed and NHS consultant contracts not renewed, and the results
of biomedical research from abroad have been ridiculed and rejected.

Due to the relentless efforts of psychiatrists whose vested interests have now
been exposed, the view has gained credence that it is acceptable to regard those
with ME who are not willing to receive a psychiatric diagnosis as being
“undeserving of treatment” (quoted from a lecture given in October 1999 at
Strathclyde University by Professor Michael Sharpe [see below], who then
disingenuously asserted that such a view is deplorable and that he was merely
paraphrasing Bernard Shaw’s ‘Pygmalion’). So that Parliamentary Inquiry
Members may judge for themselves, Sharpe’s actual words were: “Purchasers
and Health Care providers with hard pressed budgets are understandably
reluctant to spend money on patients who are not going to die and for whom
there is controversy about the “reality” of their condition. They are in this sense
undeserving of treatment. Those who cannot be fitted into a scheme of objective
bodily illness yet refuse to be placed into and accept the stigma of mental illness
remain – to paraphrase Bernard Shaw -- the undeserving sick of our society and
our health service”.

We submit that these psychiatrists have been responsible for the promotion of a
potentially damaging psychiatric management regime of cognitive behavioural
therapy (CBT) that includes a programme of graded exercise, CBT being
described in the “independent” report to the UK Chief Medical Officer of
January 2002 as “a tool for constructively modifying attitude and behaviour”
(Report Summary, Annexe 6, page 8).

Evidence exists that shows CBT is at best ineffective and at worst harmful in
authentic ME, resulting in severe relapse that may be lifelong.

Attention is drawn to the current issue of PULSE, 29th October 2005, pages 14-
15, which highlights the death of a 46 year old woman from Cardiff who died at
a supervised gym following a GP referral. The medical defence organisations
have repeatedly warned doctors that exercise programmes must be prescribed
with the same degree of care as drug prescriptions and the item in PULSE noted
that a study in the Journal of Public Health found that a small minority of GPs
were responsible for the vast majority of exercise referrals; it noted that legal
concerns are once again in the news, and that many GPs were reluctant to make
referrals because of the lack of evidence and concerns over medico-legal
responsibility.

The group of psychiatrists and supporters involved has become colloquially

known as the “Wessely School” (see Hansard [Lords]: 19th December
1998:1013), so named after psychiatrist Professor Simon Wessely from King’s
College Hospital and The Institute of Psychiatry, London, whose published
personal views on the non-existence of ME are prolific. Other prominent
members of the Wessely School include psychiatrists Professor Peter White
from St Bartholomew’s Hospital, London and Professor Michael Sharpe,
formerly of Oxford but now at Edinburgh: their involvement, as that of their
like-minded colleagues, is documented in the literature listed below, most
notably their long-term close association with the medical insurance industry.

The influence of this group of psychiatrists is extensive throughout UK

Government Departments, the NHS and even the Judiciary: one severely
affected litigant in a High Court action was informed that “Judges regard ME as
self-indulgence”.

In 1999, the Countess of Mar, a stalwart campaigner for the UK ME

community, obtained the Opinion of a Leading Queen’s Counsel in the House
of Lords; the eminent QC’s Opinion stated:

“On the document you have sent me there is an overwhelming case for the
setting up of an immediate independent investigation as to whether the nature,
cause and treatment of ME as considered by the Wessely School is acceptable
or consistent with good and safe medical practice. There is substantial doubt as
to whether such could be the case. A formal request should be made to set up
such an enquiry at which interested parties could be represented by Counsel”.

Attempts to do so have been unsuccessful until the present good auspices of Dr

Ian Gibson MP (former Chairman of the Commons Science and Technology
Select Committee and former Dean of Biology at the University of East Anglia)
have made it possible, to whom the UK ME community owes considerable
gratitude.

We ourselves submitted 92 pages of accurate references published in reputable

medical and scientific international journals that provided convincing evidence
of the organic and serious multi-system nature of the disorder to both the Chief
Medical Officer’s Working Group and to the Medical Research Council during
their respective deliberations on the direction of future research into what they
both refer to as “CFS/ME”. The reason this term is used was explained by
Wessely himself: “It may seem that adopting the lay label (of ME) reinforces
the perceived disability. A compromise strategy is ‘constructive labelling’: it
would mean treating chronic fatigue syndrome as a legitimate illness while
gradually expanding understanding of the condition to incorporate the
psychological and social dimensions. The recent adoption by the UK Medical
Research Council and the chief medical officer’s report of the term CFS/ME
reflects such a compromise” (BMJ: 2003:326:595-597).

For ease of reference, the papers were broadly divided into sections that
included historical papers on ME (1938-1980); general papers on ME (ie.
papers that addressed multi-system anomalies, for example the evidence of
impaired oxygen delivery to muscle and evidence of delayed recovery from
fatiguing exercise, as well as balance and visual problems); laboratory findings
in ME; quality of life in ME; chronicity and severity in ME; precipitating
factors in ME; epidemiology of ME; neuroendocrine abnormalities in ME;
neurological abnormalities in ME; evidence of demyelination in ME; ocular
problems in ME; virology in ME; overlap of ME with Post-Polio Syndrome;
chemical injury to the blood brain barrier; immunology in ME (including
evidence of hair loss and mouth ulcers in ME); allergies and hypersensitivities
in ME; anaesthesia problems in ME; vascular problems in ME; cardiac
problems in ME; respiratory problems in ME, gut dysfunction in ME; liver and
pancreatic involvement in ME; brain imaging anomalies seen in ME; cognitive
dysfunction in ME; gynaecological problems in ME; special problems in
children with ME, and the similarities and differences between ME and
fibromyalgia.

On each occasion, our submissions were comprehensively ignored by the

Government bodies concerned.

Some of our documented concerns and supportive evidence were also passed by
the Countess of Mar to appropriate government officers for presentation to the
Chief Medical Officer and to the Director of the Benefits Agency Medical
Services, with a request by Lady Mar for a detailed response. The answer came
in a written response from an MP: it had been decided at Ministerial level that
our evidence should be ignored and that no action be taken.

The documents listed below provide a paper-trail record of our concerns that the
increasing incidence and prevalence (and even the very existence) of a serious
neuro-immuno-vascular disorder are being denied by UK Government bodies
due to the malign influence of Wessely School psychiatrists.

1994

The Views of Dr Simon Wessely on M.E.: Scientific Misconduct in the

Selection and Presentation of Available Evidence?
Eileen Marshall and Margaret Williams

The CFIDS Chronicle: Spring 1994:14-18

The article provided direct quotations from Wessely’s published work on

ME/CFS, including several for which he has become notorious, for example,
that ME exists only because of patients’ ‘maladaptive coping strategies’; that
ME is simply one end of a continuum of ‘tiredness’; that it is nothing more than
an attitude problem experienced by suggestible people who see ME as an easy
escape route from life’s problems; that ‘a little more psychology and a little less
T cells (ie. immunology) would be welcome’; that any observed abnormality of
muscle function may result from physical inactivity; that on examination of
those with ME, “the usual findings of simulated weakness were present”; that
those with ME exhibit “learned helplessness”; that “the description given by a
leading gastro-enterologist at the Mayo clinic remains accurate: ‘the average
doctor will see that they are neurotic and he will often be disgusted with them’
”.

Note: Simon Wessely personally threatened the UK distributors of The CFIDS

Chronicle with an injunction unless they promised to deface every copy and
remove our article before distributing the Spring issue in the UK; Wessely’s
threats were acted upon, but copies that came direct from the US were not
defaced. People in the UK were outraged that copies for which they had paid in
advance had been defaced even without an injunction.

Letters to the Editor: Simon Wessely Follow-up

Eileen Marshall Margaret Williams

The CFIDS Chronicle: Summer 1994: 77-79

Our reply to Wessely’s response pointed out that, contrary to what he stated (“I
run the only free service solely dedicated to the needs of patients with CFS/ME
between the River Thames and the Coast”), in the UK there is a National Health
Service and that this means that all patients can receive free treatment, and that
there were at the time numerous other NHS Consultants who ran clinics south
of the River Thames specifically for ME patients. We also pointed out that,
contrary to his claims, he was not “principal expert witness in two medico-legal
cases concerning CFS” but was in fact one of three medical expert witnesses in
both cases. We also noted that, since Wessely asserts that he does not recognise
ME as a distinct entity but includes all people with chronic fatigue under the
single label of CFS, his claim that “research has shown that our rehabilitation
programmes are proving successful” needs to be questioned, because we have
no idea about how many of his patients actually have ME. We also noted that it
is sadly true that Wessely has changed the facts about ME; that he has indeed
misrepresented the valid findings of other researchers and that he does indeed
ignore important findings that do not support his own views and, bearing this in
mind, we felt justified in querying whether or not this amounted to scientific
misconduct.

1995

UK Task Force Report: CFS/M.E. is Real

Eileen Marshall and Margaret Williams

The CFIDS Chronicle: Spring 1995: 22-23

This document summarised the UK National Task Force Report from Westcare,
September 1994, pointing out that the Report was unequivocal in its conclusion
that progress in understanding ME is hampered by the use of heterogeneous
study groups and definitions of “CFS”, by the lack of standardised laboratory
tests, and by the invalid comparison of contradictory research findings
stemming from these factors.

1996

Conference Report: Transcript of Lecture given on 23rd November 1995 at

the Coventry and Warwickshire Post-Graduate Centre by Professor Peter
Behan.

Margaret Williams (using the pseudonym Julia Hamilton)

InterAction No.21: Summer 1996

This document notes that Professor Behan stated that although the diagnosis
remains essentially one of exclusion, there are now laboratory techniques that
will confirm the diagnosis; that the acute fatigue is exactly the same as that seen
in conditions such as multiple sclerosis; that by using refined techniques for
measuring gait disturbance and by measuring muscle power, a phenomenal drop
in maximum oxygen consumption is apparent; that there is very early excessive
intracellular lactic acidosis with exercise and that this tends to persist; that
patients with ME have reduced levels of acylcarnitine (carnitine being an amino
acid used in mitochondrial oxidation); that there is abnormal liver function; that
there is abnormal immune function in ME; that there is a central cellular deficit
giving rise to other abnormalities and that ME is an organic illness. The
document noted that Professor Behan made sure that the audience was left in no
doubt about his view of those psychiatrists, often powerful, who have brought to
patients with ME what Behan termed ‘enormous trouble’.

Denigration by Design? A Review, with References, of the Role of Dr

Simon Wessely in the Perception of Myalgic Encephalomyelitis 1987-1996.
Volume I pp 217.

Eileen Marshall Margaret Williams August 1996

This compendium considered the various terminologies for the disorder;

definition difficulties; Wessely’s tactics of dismissal and his relentless denial of
the evidence of organic disorder; illustrations of research findings and opinions
with which Wessely disagrees; extensive quotations from Wessely’s

published work (so there can be no denial of his views on ME/CFS); Wessely’s
obvious lack of balance; questions that Wessely might usefully be required to
answer, such as where is his evidence to support his assertions that those with
ME obtain “secondary gain” by “adopting the sick role”, and a review of the
losses sustained by those with ME that Wessely never once addresses or even
mentions.

Note that the document included a mini-review of some of the published works
on ME/CFS by Dr Anthony David (a frequent co-author with Wessely), famous
for his beliefs about ME that include: “A diagnosis of depressive illness would
be appropriate. Unfortunately, this is not good enough for the patient”; “self-
help organisations have established ‘ME’ in the minds of the public”; “doctor
behaviour, such as sick certification, emerged as a significant contributor to the
risk of chronic fatigue” and “clinicians should avoid reinforcing unproven
illness beliefs”.

Observations on the Joint Report of the UK Royal Colleges of Physicians,

Psychiatrists and General Practitioners on Chronic Fatigue Syndrome,
CR54, October 1996.

Eileen Marshall Margaret Williams 17th November 1996

This document exposed the psychiatric bias that pervaded the Report and
provided illustrations of how research evidence had been manipulated by the
Report’s authors to look as if it supported their own views when the cited
references did not support them at all. In the Joint Royal College’s Report,
Wessely et al specifically state the following: ‘ME’ does not exist; patients
wish to keep the term ‘ME’ because only with that label are they eligible to call
upon the welfare state for help; the dysfunctional beliefs of CFS/ME patients
have an important place as an obstacle to recovery; CFS/ME is a somatisation
(psychiatric) disorder; no investigations should be performed to confirm the
diagnosis; there is no convincing evidence of any change in muscle structure or
function other than those secondary to inactivity; immunological abnormalities
“should not deflect the clinician from the endorsed (psychiatric) approach and
should not focus attention towards a search for an ‘organic’ cause”; there is no
compelling evidence linking immune dysfunction with disability; there is no
reason for the creation of specialist units; specific guidelines for the
management of ME should not be issued to general practitioners; the need for
future research is regarded as unnecessary; complementary therapy is
discouraged but antidepressants should be prescribed for those with “CFS” even
in the absence of depression (advice that would seem to reflect HealthWatch
policy --see below).

1997

Comparison of the American Report for Physicians on CFS (September

1996) with the UK Joint Royal Colleges’ Report on CFS (October 1996)

Eileen Marshall Margaret Williams 20th February 1997

This document highlighted the difference in approaches to the management of

ME in the UK and the US, for example the US Report stated it is important to
note that up to 40% of carefully evaluated patients do not have psychiatric
illness; that patients should be treated with compassion; that there is a greatly
increased incidence of allergies; that there should be a reasonable laboratory
workup; that patients should be referred to professionals who can help with
applying for disability benefits and that patients benefit from participation in
support groups; that the disorder is a multisystem illness with prominent central
nervous system (CNS) involvement and that in the case of children, the
physician should work with the school to limit class time and that home tutoring
may be an alternative. In stark contrast, the UK Joint Royal Colleges’ Report
stated that children may need to be forcibly removed from their homes and
parents and that there should be an immediate return to school; that nothing but
the most basic screening tests should be carried out; that involvement with a
support group is a predictor of poor outcome; that 75% of CFS patients have
psychiatric illness; that patients with allergies may fulfil criteria for
somatisation disorder; it concluded that chronicity is likely to be associated with
unaddressed psychosocial issues.

1999

Denigration by Design? A Review, with References, of Dr (now Professor)

Simon Wessely in the Perception of Myalgic Encephalomyelitis. UP-
DATE: 1996-1999 Volume II pp 271
Margaret Williams November 1999

Like the first volume in 1996, this compilation provided further illustrations of
international research evidence on ME/CFS that Wessely School psychiatrists
dismiss, trivialise or ignore, together with accurate quotations from their own
published work. It included a section illustrating psychiatrists’ track record of
mis-attribution and considered areas where Wessely has clearly been shown to
be wrong, for example, the Camelford catastrophy, in which 20 tonnes of
aluminium sulphate were accidentally pumped into the drinking water supply in
July 1988 at Camelford, in which residents and visitors suffered distressing
symptoms such as nausea and vomiting, diarrhoea, skin rashes, musculoskeletal
pains, with malaise and impairment of memory; in some cases hair, skin and
nails turned blue; seven people died; 25,000 suffered serious health effects and
40,000 animals were affected, but which Wessely authoritatively dismissed as
mass hysteria and anxiety (whereas other competent non-psychiatrist
researchers found organic brain damage to have occurred).

The compilation considered 13 conclusions in relation to Wessely’s public

pronouncements on ME, including his view that ME is a “myth” caused by
patients’ belief that they are suffering from a disorder called ME.

The document also included a 20 page summary of some of the findings

presented at the Second World Congress on Chronic Fatigue Syndrome and
Related Disorders held in Brussels, 9-12th September 1999, in which evidence
was presented on the biochemical and microbiological aspects of the disorder,
as well as on the disrupted immunology and on the epidemiology; specifically,
it was noted that a total cardiovascular work-up reveals that frequently there are
CNS vascular occlusions in ME and that vasculitic patterns are identical to
those seen in HIV patients: SPECT and PET scans show that huge areas of the
brain are injured.

2000

Consideration of Some Issues Relating to the Published Views of

Psychiatrists of the ‘Wessely School’ in relation to their belief about the
nature, cause and treatment of myalgic encephalomyelitis (ME)

Margaret Williams, with Appendices by Val Broke-Smith and Ann Crocker

March 2000

Because the two volumes of “Denigration by Design?” were so detailed, it was

suggested that a condensed version be produced. This document looked at the
then current situation; at the evidence that psychiatrists of the Wessely School
were wrong about ME, and at the tactics of dismissal used by those
psychiatrists. The document included an Appendix on “Special issues relating
to the treatment of children and young people with ME/CFS: the perspective of
parents” by Val Broke-Smith and an open letter to the Chief Medical Officer
from Ann Crocker. It also included a recommended reading list.

2001

Submission to the CMO’s Working Group on CFS/ME: matters of

continuing concern

Margaret Williams 9th March 2001

This 22 page fully referenced document was submitted to the CMO’s Working
Group (WG) on behalf of the 25% ME Group for the Severely Disabled. Its
objective was to gain official recognition of the plight of those who do not fit
the Oxford 1991 case definition of “chronic fatigue” drawn up by Wessely
School psychiatrists upon which the CMO’s WG relied (ie. those with authentic
ME as distinct from psychiatric fatigue), so that ME patients would no longer be
excluded from NHS service provision.

The document briefly reviewed the history and symptomatology of ME and

noted the physical signs found in ME and it noted the detrimental effect of the
term “CFS” caused by its focus on one single symptom, namely “chronic
fatigue”.

More importantly, because the key players in the CMO’s WG were of the belief
that subgrouping of the heterogeneous label “CFS” was simply a matter of
“semantics”, the document provided compelling evidence from international
experts of the need for careful subgrouping.

Because the drafts of the CMO’s WG Report seemed to totally ignore the
available evidence of serious organic pathology in ME/CFS, the document also
provided summaries of some of the findings presented at the AACFS
Conference in Seattle in January 2001, including evidence of abnormalities seen
on brain studies, abnormal neurological findings, visual processing disabilities,
biochemical abnormalities, recent virological findings, recent microbiology
findings, immunology studies (including evidence of autoimmunity in ME/CFS)
and evidence of gene abnormalities, in particular, evidence of prominent RNA
not observed in normal controls. Significantly, the prominent RNA bands
sequenced showed homology with human genes that are noted for their
tendency for gene rearrangement under severe physiologic stress.

The document noted that the practice of medicine ought not to be a pitched
battle between patients and their clinicians, and that such a situation might have
arisen because for the most part, patients with severe ME are far better informed
about their condition than their doctors.

The document was entirely ignored.

Concerns about the forthcoming UK Chief Medical Officer’s Report on

ME/CFS, notably the intention to advise clinicians that only limited
investigations are necessary

Sally Montague Malcolm Hooper 30th July 2001

Because this document placed in the public domain facts that certain members
of the CMO’s WG apparently would have preferred not to be in the public
domain, it caused an outcry from some of the doctors who were acting as
Government advisers on the Working Group but who had not declared their
competing interests. Of significance was the nature of those undeclared
interests: both Professor Simon Wessely and the Medical Adviser to the ME
Association (Dr Charles Shepherd) were members of an organisation called
HealthWatch (which used to be called The Campaign Against Health Fraud),
known for its zealous views which are antagonistic towards alternative and
complementary medicine and towards those who believe in environmental and
chemically-induced illness, including multiple chemical sensitivity (a well-
documented component of authentic ME). It is a campaigning organisation that
has in the past accepted money from both the health insurance industry and the
pharmaceutical industry. The campaign’s own literature states that its aims are
to oppose unnecessary treatment for non-existent diseases. Simon Wessely is
on record as affirming that ME is a non-existent disease, and between February
and April 2002 was involved with a poll of “non-diseases” run amongst doctors
by the British Medical Journal: the poll found ME -- along with big ears and
freckles -- to be a non-disease that is best left medically untreated. Wessely is
listed in HealthWatch documents as a “leading member of the campaign”. The
Medical Adviser to the ME Association admits to being an active member.
Given that the stated remit of the CMO’s Working Group was to consider all
treatment and management options for CFS/ME, for such key figures to be
members of an organisation whose members are so strongly opposed to
complementary approaches (known to be helpful in ME) seemed a cause for
concern.

Also a matter for concern was Wessely’s close involvement with PRISMA, a
multi-national healthcare company working with medical insurance companies;
it arranges “rehabilitation” programmes for those with “CFS” and places heavy
emphasis on training sufferers to “regain a normal life again”. It claims to have
developed a “unique treatment programme” for “hopeless” cases (in which it
specifically includes “CFS”). In the PRISMA Company Information, Simon
Wessely is listed as a Corporate Officer: he is a member of the Supervisory
Board, and in order of seniority he is higher than the Board of Management. It
was a cause for concern that his favoured regime of CBT was underpinning
every aspect of the draft versions of the Report, so we asked if it was possible
that Wessely was recommending to the CMO a management regime for “CFS”
that is known to be harmful for those with authentic ME but which is provided
by a company of whose Supervisory Board Wessely is a member?

The authors of the document were fiercely attacked for using the pseudonym
“Sally Montague”, even though no deceit had taken place because the document
was never intended for submission to a journal and even though it was
explained that “Sally Montague” was a composite name encompassing six
different people, including researchers, medical scientists and clinicians, some
of whom had a life-time’s experience of ME, but who for professional and
personal reasons did not wish to reveal their identity, not least because some
were themselves severely affected by ME and were too ill to cope with any
publicity or media intrusion.

The document contained 89 references, many of which supported our view that
investigation is the only way forward towards understanding such a complex
disorder as ME, and it set out our concerns about the way the draft versions of
the CMO’s report continued to ignore the reality and nature of ME/CFS and to
assert that only the most basic screening should be carried out for those with
ME/CFS. Because of this, the document provided evidence of investigations
that international experts in the disorder deemed essential. These included
immunological testing; virological screening; endocrine testing; central,
autonomic and peripheral nervous system testing; nuclear imaging; tests for
vascular dysfunction; lung function testing; testing of exercise capacity; tests for
cardiac anomalies; tests for liver dysfunction and ocular testing.

Because of the furore occasioned by the document, on 7th July 2001 the authors
released a Statement:

“All six people contributed to the Montague / Hooper paper which sets out their
concerns about the forthcoming CMO’s report on CFS/ME. The science
described in our paper and the supporting references stand on their own and
need no justification. We believe that it is imperative that all the evidence
available about CFS/ME is considered before the CMO’s final report is
published. Official reports emanating from such a body will have far-reaching
consequences which we believe might seriously jeopardise the health and well-
being of ME sufferers and render their future prospects very bleak. We strongly
reject any attempt to label CFS/ME as a psychiatric disorder for which
psychotherapy is the only recommended treatment. It is a matter of personal
regret for all of us that it has been necessary to challenge in this way the work
of the CMO’s Working Group and its lack of transparency. However, the
failure of the CMO’s group to consider all the science and the inability for
dissenting views to be accommodated leave us no option”.

(In the event the final Report, as the various drafts, asserted that only the most
basic and routine tests were appropriate and that the management regime of
choice was to be cognitive behavioural therapy with graded exercise).

Concepts of Accountability?

Sally Montague Malcolm Hooper and associates 28th August 2001

Due entirely to the explosion of harassment directed at Professor Hooper by

certain medical members of the CMO’s Working Group and to the torrent of
abusive letters to Hooper himself, including a lengthy series of letters to the
Vice Chancellor of Hooper’s University demanding that he appear before a
“disciplinary” hearing, not forgetting the correspondence from Professor Simon
Wessely or the letters sent to Hooper from the Solicitor to HealthWatch, or the
letter to Hooper from Nick Ross (of “Crimewatch” fame, who is also one of the
founders of HealthWatch but who seemed unaware of what the HealthWatch
literature actually states in black and white), it was deemed sensible to compile
a comprehensive document setting out the background to the writing of the
Montague / Hooper paper.

The document stated that those associated with the Montague / Hooper paper
were concerned that UK patients will continue to be denied appropriate
investigations if the advice of the “Wessely School” is unquestioningly accepted
by the CMO’s Working Group.

The document amounted to 69 pages and contained 134 references. Sections

included information on HealthWatch and on its published views about ME:
since the late 1980s HealthWatch has carried out a sustained and vicious attack
on ME patients, most publicly and notably by its activists Caroline Richmond (a
journalist and one of the founders of HealthWatch, known for her extreme
animosity towards those with ME) and, even more vitriolically, by Dr Mike
Fitzpatrick, a GP named as medical writer for HealthWatch, who also writes for
the on-line publication “spiked”. Fitzpatrick is famed for his publications
denigrating those with ME and for his public attack in 2002 on the CMO for
taking ME seriously, claiming that the CMO’s stance was “ a surrender of
medical authority to irrationality”. The document also provided some of the
antagonistic views of HealthWatch towards nutritional therapies (which have
been found to be helpful in ME). The document also noted the involvement of
the Medical Adviser to the ME Association with HealthWatch activities against
doctors who were deemed by HealthWatch activists to be acting against the best
interests of the pharmaceutical industry.

Composite Response on the Final Draft Version of the CMO’s Report of

31st August 2001

Edited by Malcolm Hooper 20th September 2001

This fully referenced 39 page document was a last attempt to modify the
intransigent views of the key players who dominated the CMO’s Working
Group. It addressed the assertions contained in the final draft of the Report
which the international evidence had clearly shown to be untenable and it
pointed out glaring and indefensible errors of fact.

The document was once again entirely ignored by those responsible for the
CMO’s WG “independent” Report.

The 1996 Strasbourg Convention on Biomedicine and the Reform of the

UK Mental Health Act: have they anything to do with the attempt to re-
classify ME and CFS as mental illness in the WHO Guide to Mental Health
in Primary Care?

Margaret Williams September 2001

This document noted Wessely’s view that “Functional somatic syndromes (ie.
psychiatric syndromes, in which he includes “CFS/ME”) pose a major
challenge to medicine and that they are associated with unnecessary expenditure
of medical resources” and his view that such syndromes “urgently require
improved management”. Mindful of Wessely’s beliefs about compulsory
“management” of ME/CFS, the document noted the proposed changes to a
person’s right not to be experimented upon without their informed consent; in
particular, that there are three groups of people for whom such consent will not
in future be required: those who are deemed to be mentally ill; those for whom
no other known treatment is effective, and children. It also noted that in certain
situations, “general interests” will take priority over those of the individual. It
considered the proposals for reform of the UK Mental Health Act (1983),
which would give psychiatrists far greater powers to enforce compulsory
psychiatric treatment upon both adults and children in that psychiatrists would
be able to drug people (including children against the wishes of their parents) if
they have “any disability or disorder of the mind or brain, whether permanent or
temporary, which results in an impairment of mental functioning”, and the
document noted that this seemed a chillingly watertight definition. The
document questioned how such changes might relate to those with ME/CFS if
Wessely et al were to be successful in re-classifying it from its present
classification of neurological to a “mental” classification, and it included a
quotation from a Ministerial response to this question. The document also
questioned whether “general interests” are already taking priority over those of
the individual, and asked if those “general interests” are economically and
commercially determined.

Comments on the Australasian Report on CFS

Margaret Williams (compiled from various published critiques). 2nd December

2001

“Wessely School” influence is not limited to the UK: it extends to Australasia,

where Wessely has certainly lectured; see “Simon Wessely: Prophet or Profit”
by Dr Ken Jolly, a New Zealand GP, published in ANZMES Meeting Place:
Spring 1998: 56:10-12, where Jolly exposes what he refers to as “an alarming
trend” by Wessely of diverting research into ME along blind paths; how this has
affected sufferers’ accessibility to medical care and financial assistance and how
Wessely’s influence has resulted in clinicians with opposing views being
sidelined by his having convinced the authorities that ME patients do not have a
physical illness. Jolly highlights what he calls Wessely’s “main mistake”,
namely that Wessely concentrates only on “fatigue” and ignores all other
symptoms, thereby distorting study results, noting that Wessely’s beliefs are
misguided, but that Wessely may be unaware of the damage he is causing to
sufferers. There is one particularly prominent psychiatrist in Australia and
another in New Zealand who seem to display an identical closed mind to the
international scientific evidence of organic pathology in ME/CFS and who seem
to exhibit the same bias as shown by Wessely himself. The Report of The
Royal Australasian College of Physicians reflects this psychiatric bias.

Because the psychiatrists who dominated the CMO’s Working Group and the
MRC CFS Research Advisory Group placed such heavy reliance upon the
Australasian Report, it became necessary to compile a concise document
containing published critiques by experts including Dr Abhijit Chaudhuri from
Scotland; Dr Eleanor Stein from Canada; Dr Peter del Fante from Australia;
Professor Peter Rowe from Johns Hopkins, Baltimore; Dr Lawrence Budd from
Australia and Dr Nicole Phillips from Australia, all of whom cogently exposed
the many shortcomings and undisputed psychiatric bias of the Australian
Report.

What is ME? What is CFS? Information for Clinicians and Lawyers

EP Marshall M Williams M Hooper December 2001

This fully referenced document was published as a 26 page booklet and because
of the demand, went through four print runs. It looked at the history and
classification of ME; it provided a description of ME; it documented the
symptoms seen in ME and the evidence of abnormalities found in ME; it listed
precipitating factors and the physical signs found in ME; it discussed the
changing definitions in relation to the emergence of “CFS” in 1988, and at how
“CFS” displaced ME in the UK. It included a note of caution for lawyers and
suggested that clinicians and lawyers need to come to their own conclusions
about what might motivate a group of doctors (mostly psychiatrists) to
disassemble a formally classified neurological disorder and endeavour to
replace it by a much larger category of “behavioural” illness.

2002

Medical Research Council’s plans for research

Margaret Williams 18th June 2002

Following the publication in January 2002 of the CMO’s Working Group

Report on “CFS/ME” and the decision by the Chief Medical Officer to hand
over responsibility for the direction of future research into “CFS/ME” to the
Medical Research Council, a Briefing on the MRC’s strategy for advancing
research into CFS/ME took place at the House of Commons, at which Dr Diana
Dunstan of the MRC announced that a group of leading experts from various
fields had been convened “who did not previously specialise in CFS/ME”
because it was felt important to have “ a fresh and independent look” at the
issue.

This document noted that it would seem to be erroneous for the MRC
spokesperson Dr Diana Dunstan to claim that members of the panel were
“independent” and “fresh” to the issue of ME/CFS and that it would seem to be
deliberate misinformation, and thus misleading and untrue. It was pointed out
that at least two of the MRC Research Advisory Group (RAG) members were
not at all “fresh” to the issue, because one of them (Professor Alan McGregor)
had not only co-authored two papers on CFS with Wessely but was listed as a
member of the Linbury Trust Advisory Panel on CFS that had been funding
Wessely’s psychiatric studies on “CFS” since 1991; another (Professor Philip
Cowan from the Psychopharmacology Research Unit at Oxford) was on record
as holding strong views on the psychiatric nature of CFS and was co-author of a
paper on CFS with Professor Michael Sharpe. It was also noted that another
member of the RAG was Professor Til Wykes (who, as Simon Wessely, is from
The Institute of Psychiatry) who is on record as believing about CBT: “If you
encourage them to do things, as part of a treatment called cognitive behavioural
therapy, you do see improvement. It’s a way of getting people to take control of
their lives”.

The document asked why there was no neurologist and no vascular medicine
specialist on the MRC panel of “experts”.

Following representations, the then Chief Executive of the MRC (Professor Sir
George Radda CBE FRS) was compelled by letter dated 15th July 2002 to
concede Professor McGregor’s involvement with the Linbury Trust and the fact
that he had previously co-authored papers on CFS with Wessely (which Radda
inadequately tried to defend, saying “You cite papers from some years ago but
he has not published further on CFS/ME”). However, the letter also stated:
“Thank you for your suggestion about the need for a neurologist. This fits with
other comments we have received. The Chairman of the group agrees this is a
good idea and we are actively seeking a suitable person”. The inclusion of a
suitable neurologist ought surely to have been obligatory from the outset in a
group that was supposed to be considering future research for a WHO-classified
neurological disorder.

Over-view of the Alison Hunter Memorial Foundation ME/CFS Clinical

and Scientific Meeting, December 2001, Sydney, Australia

Margaret Williams (with grateful acknowledgement to Dr Rosamund Vallings

and to Jan van Roijen)

15th July 2002

This document summarised some of the presentations given at this international

conference by world-renowned experts including Anthony Komaroff, Professor
of Medicine at Harvard; Professor Kenny de Meirleir from Brussels; Professor
Neil McGregor from Newcastle, New South Wales; Dr Dharam Ablashi from
Colorado and Dr Susan Levine from New York, who variously presented
evidence on the biology of ME/CFS; on gastrointestinal problems and gastric
emptying studies; on ME and MS as subsets of a group of cellular immunity
disorders; on active HHV6 infection and its correlation with RNaseL low
molecular weight protein (37KDa) in ME patients; on the objective evidence of
brain impairment; on disruption to regional cerebral blood flow; on the
pathophysiological mechanisms in ME; on the biochemical anomalies found in
ME; on food intolerance in ME and on channelopathy in ME. Komaroff
emphasised that some patients are completely disabled by ME and noted that
their impairment, as measured by the SF-36 instrument, is comparable with that
of patients with congestive heart failure. He said the evidence indicates an
organic basis for the disorder.
Important paper which explains multiple chemical sensitivity (MCS).

Reviewed by Margaret Williams August 2002

This document reviews a seminal paper by Professor Marty Pall from the
School of Molecular Biosciences at Washington State University published in
the prestigious Journal of the Federation of American Societies for
Experimental Biology in September 2002.

Pall’s paper presents a validated explanation for the biological basis of the
specific symptom pattern found in MCS (including the ‘spreading
phenomenon’) associated with chemical exposure and injury. MCS is a known
component of ME. Sceptics, including psychiatrists, have been wont to scoff at
MCS sufferers, claiming that “there is no known mechanism whereby low
levels of chemicals of widely varied chemical structure can interact adversely
with numerous organ systems”; thanks to Pall, such disbelief and dismissal will
no longer be tenable.

Notes on current research in ME

Margaret Williams November 2002

This document noted that the key feature of current ME research is one of
compromised immune cells, with significant disturbance to various important
pathways and it noted the work of three teams.

The team from the Vascular Diseases Research Unit at Dundee (Dr Vance
Spence et al) have identified four major pathways that are deranged in ME: the
pattern of results is specific to ME and the evidence points towards ME being a
separate and distinct syndrome. Many of the symptoms of ME can be explained
by dysfunction of blood vessels, especially at the level of endothelial cells (the
inner lining of blood vessels). There is clear evidence of accelerated apoptosis
(programmed cell death) of specific immune cells in ME patients.

Professor Kenny de Meirleir from Brussels presented a paper in Northern

Ireland on 2nd November 2002 in which he demonstrated that ME is a disorder
of the immune system: he has found evidence of small fragments of specific
RNaseL nucleotides (from the antiviral defence pathway) within the cells,
causing chaos, with serious injury to the cell. The damage caused by these
fragments is not discernible on standard blood tests. Such interference gives
rise to disturbances in many pathways including oxidative stress, lipid
peroxidation and cellular apoptosis, with consequences for the vascular
endothelium. This work ties in with the work of Spence et al.
Professor Mina Behan of Glasgow (now deceased) had found very swollen
muscle cells in some patients with well-defined ME, the cells being disordered
and dysfunctional, with clearly visible enlarged and thickened mitochondria.
This hypertrophy of the mitochondria is possibly the result of the cells’
continued efforts to get energy.

The document noted that given these known biomarkers of significant cell
injury in ME, for the authors

of the CMO’s Report to advise that comprehensive testing is neither necessary

nor appropriate for those with ME and for the Report to promote forced exercise
regimes (with the assertion that psychotherapy is the only “evidence-based”
form of management for ME) has once again been shown to defy scientific
credibility.

Response to the MRC Research Advisory Group (RAG) Draft Document

for Public Consultation on “CFS/ME” Research Strategy dated 17th
December 2002

M Hooper EP Marshall M Williams 27th December 2002

This 26 page document containing 37 references was submitted to the MRC as

part of the MRC’s “public consultation”. It contained stringent refutations of
the many misleading assertions contained in the RAG document, for example,
the RAG document stated at paragraph 6: “A strategy is proposed which
reflects the current state of knowledge of CFS/ME”, which was demonstrably
untrue because the RAG also stated (at paragraph 82) that “The MRC CFS/ME
Research Advisory Group has not undertaken a detailed review of the current
level of scientific knowledge of CFS/ME” and (at paragraph 102) stated “at no
point has the literature been systematically reviewed”, so our document pointed
out that this was surely essential if the RAG wished to produce a credible
research strategy. Another misleading assertion in the RAG document stated:
“Clinical experience would indicate that most patients with CFS/ME have
neurological signs that lie within the normal range”, so we drew attention to the
fact that both the 1991 Oxford criteria for CFS and the 1994 CDC criteria for
CFS expressly exclude patients who have any physical signs and that the 1994
criteria are unequivocal on this, stating: “We dropped all physical signs”. We
asked what disorder the RAG was talking about as it could not be talking about
ME, which is formally classified by the WHO as a neurological disorder. The
RAG consultation document went on to emphasise the effects of suggestibility
on patients with CFS/ME and it also emphasised “personality factors”, which
we pointed out seemed to expose the underlying agenda of the MRC, so we
again disputed that the RAG was aware of the current state of the biomedical
knowledge on ME/CFS and suggested that without such knowledge, it was not
possible for the RAG to deliver any credible research strategy for ME/CFS.

In our document, we said: “The authors of the RAG draft document have
ignored all the justified criticism of the information on which they place so
much reliance; this is momentous, because that criticism revealed the
misrepresentations, the misinterpretations, the denial of available credible
evidence, the deception, the selectivity in use of the available evidence, the
methodological flaws and the many omissions which pervade so much of the
Wessely School literature. Significantly, claims made by these psychiatrists are
not established facts at all, nor are they supported in the international literature”.

We asked if there was a credible explanation, and suggested one that seemed to
have most validity – namely, a contribution from Professor Michael Sharpe
contained in a Report of the largest medical insurance company
(UNUMProvident --- for Sharpe’s involvement with this company, see below)
called Trends in Health and Disability 2002, in which Sharpe said about CFS:
“There is strong evidence that symptoms and disability are shaped by
psychological factors. Especially important are patients’ beliefs and fears about
their symptoms. Causal factors are personality, disease attribution and avoidant
coping style. Obstacles to recovery (are) the current system of state benefits
(and) insurance payments. It will be imperative that health and social policy
address this problem. Funding of rehabilitation by commercial bodies has
begun in the UK (with organisations such as PRISMA) and is likely to
continue”.

In our conclusion we said that bad science, bad “policy” and vested commercial
interests deserve to be exposed and criticised, but it seems likely from the MRC
RAG document that a substantial number of very sick people with a complex
neuro-endocrine-immuno-vascular disorder are not going to be allowed to stand
in the way of those commercial interests.

(It is important to be aware that in 2000 [during the life of the CMO’s Working
Group], the parent of an ME adolescent believed it vital that all members of the
CMO’s Key Group and Children’s Group should each have a copy of Dr Byron
Hyde’s 724 page seminal textbook on ME/CFS, so at her own expense she
arranged for 128 copies to be shipped over from Canada direct to the
Department of Health’s Headquarters Disability Section at Quarry House in
Leeds. It cost her £800. She herself arranged that out of the 128 copies, twenty
would be sent to the members of the CMO’s Key and Children’s Groups, which
Helen Wiggins at the Department of Health in Leeds promised to do. On 27th
November 2003, Dr Charles Shepherd [Medical Adviser to the ME Association
and member of the CMO’s Key Group] confirmed in writing that: “20 copies of
Byron’s book may well have been intended to go to members of the CMO’s
Key and Children’s group but I never received one. And I’m almost certain that
nobody else on either of these two groups did either”. The failure to provide the
promised copies of this important textbook was but a fore-runner of what
occurred during the life of the MRC Research Advisory Group: the person who
had paid for the copies to be sent to the Department of Health had been
informed that, of the original 128 copies, the remaining 108 would definitely be
put to good and appropriate use, so when problems with the MRC RAG arose,
she contacted Quarry Hill to arrange for copies to sent to each of the RAG
members. Having managed to obtain the names and email addresses of every
member of the RAG, she contacted each of them to advise them that they would
be receiving a copy of the textbook. What happened next is astonishing: the
RAG members contacted Elizabeth Mitchell of the MRC about the book, who
rang the parent of the sick youth and was very angry indeed, refusing outright to
allow each member of the RAG to see a copy. On 20th October 2002, all
Elizabeth Mitchell would agree to was that TWO copies could be sent from the
Department of Health in Leeds to the MRC (which she insisted was to be at the
parent’s own expense). When the parent contacted Quarry House in Leeds, she
was told that the Department of Health had “lost track” of the remaining 108
textbooks. The parent managed to establish that some had been dumped at the
Cystic Fibrosis Service at Seacroft Hospital in Leeds, but that most of the 108
books were missing, believed trashed. On 8th January 2003 the parent was
informed by Elizabeth Mitchell that she would allow the two copies to be
available to RAG members before and after one meeting only, and that this was
sufficient. It seems unrealistic to expect each member of a group of busy
people to be able to consider a 724 page textbook if it was available to them for
only a few minutes before and after one meeting).

2003

Note on the apparent bias of MRC “CFS/ME” Research Advisory Group

in their draft document for public consultation dated 17th December 2002

M Hooper EP Marshall M Williams 2nd January 2003

In this short document, entitled “Elementary Rules of Procedure”, we noted

that there are in existence such rules, of which the MRC RAG seemed to be
ignorant. We noted that the MRC RAG consisted of experts of professorial
status, so they would be expected to know that post-graduate students who
undertake a higher degree by research are expected before proceeding to define
the proposed topic and to produce a comprehensive review of the relevant
literature. Only by doing so can they place themselves in a position to ensure
that their own prospective contribution represents a useful development of
knowledge. We posited that what seemed to be missing from the MRC RAG
draft document was the prerequisite review of what has already been
established about the disorder.

We noted that by neglecting this first step, the RAG members failed to ensure
that their contribution would be situated squarely on the foundations of existing
knowledge about the disorder, and we noted that as the pre-existing body of
knowledge is extensive, it appeared to have been deliberately ignored by the
MRC RAG, and that by proceeding as if this substantive body of mainstream
knowledge did not exist, the authors of the RAG Report laid themselves open to
suspicions of disingenuousness, or even frank intellectual dishonesty. We
commented that any conscientious academic supervisor would be obliged to
reject the MRC proposal on the grounds that the proposed research strategy
would not be expected to move understanding or knowledge along, but would
only reinforce existing confusion. We noted that it was both disappointing and
baffling that the MRC had allowed such a poorly-grounded, haphazard and
potentially biased proposal to be entertained.

We received no acknowledgement from the MRC and our communication was

ignored.

Some salient points arising from the AACFS 6th International Conference
which the MRC RAG might wish to consider

Margaret Williams 3rd March 2003

The document summarised some of the findings at the AACFS International

Conference that was held at Chantilly, Virginia, USA from 31st January to 2nd
February 2003. As with the preceding document, it was submitted to the MRC
but was ignored.

The document noted that in their Introduction and Overview, Professor Charles
Lapp (from North Carolina) and Professor Leonard Jason (from Chicago,
Illinois) stated that in 50% of ME/CFS cases there was a family history of
autoimmune disease and that people with ME/CFS were found to be more
impaired than those with Type 2 diabetes, congestive heart failure, MS, or end-
stage renal failure; there may be abnormal laboratory findings including
immune complexes, atypical lymphocytes, lowered IgG, and anomalies in
cholesterol, anti-nuclear antibodies and thyroid antibodies. SPECT scans
demonstrate decreases in cerebral blood flow with exercise; up to 50% of
patients are unable to work.

The document noted that Professor Robert Suhadolnick (Temple University,

Philadelphia) gave an over view of the biochemistry and genetics of ME/CFS
and confirmed that immune activation and NK cell decrease are evident in most
patients. He confirmed that 2-5 RNaseL abnormalities have been shown in
ME/CFS patients, particularly the severely ill, but not in healthy controls, and
that elevated levels of RNaseL are associated with reduced maximum oxygen
uptake and with exercise duration. He also showed that there was an increase in
markers of oxidative damage and that there is evidence of changes in brain
function.

The document briefly summarised other presentations: John Hay (from

Buffalo, New York) presented evidence of infection and immunological
changes, and noted the autoimmunity link in ME/CFS; K Maher (from Miami,
Florida) discussed the molecular defects seen in ME/CFS; P McGaffney (from
Minneapolis, Minnesota) demonstrated a significant difference in gene
expression, showing elevated expression of IL-1 (a very potent inflammatory
cytokine) and noted that certain genes were dysregulated in almost all ME/CFS
patients but in none of the controls; Dr Daniel Peterson (from Incline Village,
Nevada) showed abnormalities that included altered HPA axis, regional
hypoperfusion in the brain, hypo brain metabolism, autonomic dysfunction and
peturbation of brain hormones, as well as either primary or reactivated central
nervous system infection.

Professor Ben Natelson (from New Jersey) showed that 44% of those with
ME/CFS were found to have lumbar puncture results in the abnormal range for
protein or white blood cells (thus supporting the view that some patients do
have underlying pathologic brain processes that are responsible for their
symptoms); Dr Christopher Snell (from Stockton, California) presented
evidence of an abnormal response to exercise in ME/CFS patients; Dr Arnold
Peckerman (from Newark, New Jersey) presented evidence of inefficient
utilisation of respiratory muscles, and E Georgiades (from Glasgow, UK) had
examined the cardiopulmonary and metabolic responses to exercise in ME/CFS
patents compared with controls and reported that patients demonstrated
impaired exercise tolerance.

As noted above, as with all our submissions to the MRC, our document was
ignored.

Matters for the MRC RAG on “CFS/ME” to consider

Margaret Williams 6th March 2003

Before the publication of the final MRC RAG Report, two further points were
brought specifically to the attention of the MRC RAG:
1. At the American Association of CFS (AACFS) 6th International Conference
in 2003, Professor Charles Lapp drew attention to the fact that Dr Daniel Clauw
(Director of the Fatigue Research Centre at the University of Michigan) had
studied the effects of CBT on over 1,000 patients and found that after three
months, there were very modest improvements, but when followed up at six and
twelve months, those modest gains were lost.

2. On 2nd March 2003, the Sunday Times reported that under the auspices of
the Cochrane Collaboration, Simon Wessely had just led a review of the
evidence for psychological counselling and that the Cochrane review concluded
that such counselling was at best useless and at worst made people worse.

The question posed to the MRC was explicit: if counselling does not work, and
if the aim of CBT is to counsel patients with ME/CFS about changing their
beliefs and if, as shown by Clauw, CBT has no lasting benefit, on what
‘evidence-base’ will the MRC continue to grant £2.6 million to psychiatrists of
the Wessely School to keep on looking at interventions that have already been
shown not to work?

Short Review of New Publication by Professor Malcolm Hooper

Margaret Williams 4th April 2003

This document noted that two new publications would be of paramount

importance to both the Gulf War Veterans and the ME community: a news
release by Robert Bradford, Senior Director of Communications at the Salk
Institute, California, drew attention to published findings from the Salk Institute
for Biological Studies at La Jolla, which was the first to demonstrate a clear
genetic link between neurological disorders and exposure to organophosphate
chemicals.

The second publication was a colour-illustrated fully referenced 85 page booklet

by Professor Malcolm Hooper called “Engaging with Myalgic
Encephalomyelitis”. In his customary robust form, Hooper deals with facts, not
beliefs or speculation, and those facts are soundly based on biochemistry, which
those who promote a primary psychiatric pathoaetiology will find difficult to
refute with any degree of credibility. Hooper is explicit: he writes that he has
examined much of the ME literature and is “fully persuaded of the organic
nature of this illness and the folly and cruelty of attempting to regard it
otherwise”.

Hooper is unenthusiastic about the MRC RAG Report, stating that “much
evidence was ignored” and he quotes the searing comments of world experts
who pointed out that the Royal Australasian College of Physicians’ Guidelines
upon which the MRC RAG relied were heavily flawed, biased, inaccurate and
based on personal belief as opposed to evidence-based science.

He identifies various investigations, including more specialised tests than the

basic screening advocated by the CMO’s Working Group Report, which are of
major importance in diagnosis, together with treatment protocols that have a
realistic prospect of success, including the removal from the diet of
casomorphins (present in cows milk) and gliadomorphins (present in wheat).

The main thrust of the booklet is a detailed explanation of the neuroendocrine –

immune paradigm and the interactive web of biochemical / physiological
deficits found in ME patients, and it explained the mechanism by which
chemicals cause changes that allow free transport of compounds into areas such
as the brain and central nervous system from which they would normally be
excluded and how they are then absorbed into the blood stream, giving rise to
autoimmune diseases with very significant and chronic damage to health.

Ignoring the evidence? A response to the final version of the MRC

CFS/ME Research Advisory Group Strategy Report of 1st May 2003

Malcolm Hooper Eileen Marshall Margaret Williams 5th May 2003

Our concerns that without an adequate understanding of the underlying

pathology of ME/CFS there could be no advance in the search for possible
treatment were disregarded and all our documents were entirely ignored: the
final RAG report that was released on 1st May 2003 accepted Wessely School
psychiatrists’ conjecture about the disorder in preference to a biomedical
explanation, of which evidence there was a sustained rejection throughout the
RAG Report.

The RAG Report stated that it fully endorsed the conclusions of CMO’s
Working Group Report; it asserted that studies of causal pathways of ME would
do nothing to increase understanding of the disorder and it recommended CBT
and graded exercise for those with “CFS/ME” and, specifically, that more
studies of CBT and graded exercise should be undertaken, and that the direction
of future management strategy should “concentrate on the effects of these
interventions across the spectrum of the disorder” (ie. on both the least severe
and on the most severe cases).

Of particular note was the fact that the Report’s author was Dr Chris Watkins,
whose title was “MRC Programme Manager for Research on Mental Illness”.

In our document, we recorded our specific concerns about the misinformation

contained in the MRC RAG Report and drew attention to the apparently
deliberate failure to confirm the WHO classification of ME as a neurological
disorder (which exactly echoed the misinformation in the CMO’s Working
Group Report of January 2002).

We noted that no-one denies the reality of psychiatric illness, nor the debility
such psychiatric illness may cause, but what is at issue here is accuracy of case
definition, which in our view has not been helped by the MRC RAG Report:
whereas psychiatric illness is commonly amenable to psychotherapeutic
interventions, complex neuro-immune disorders are not.

As was the case with the MRC’s initial Briefing about the need for “fresh”
experts, the MRC once again seemed less than transparent about the Report
itself, ensuring that the “take-home” message for the media about their RAG
Report was that the MRC intended to make “CFS/ME” a priority area for
grants.

What it failed to disclose was that its preference was for grants to psychiatrists
of the Wessely School: just two weeks after the release of the RAG Report, on
15th May 2003 it became known that the MRC was to fund two trials of CBT for
those with “CFS/ME” at a cost to the taxpayer of £2.6 million (the PACE trials,
an acronym for active Pacing, graded Activity, Cognitive behavioural therapy
and Evaluation).

This was preceded by an announcement on 12th May 2003 by the Health

Minister (Jacqui Smith) that an additional £8.5 million was being made
available by Government for services for those with “CFS/ME”.

It quickly became obvious that these “services” are in fact clinics that will
deliver CBT and graded exercise: job description advertisements for staff for
these clinics stated that the aim is to “change perpetuating illness behaviour and
modify predisposing personality style” for patients who “experience barriers to
understanding” and stated “there can be significant barriers to accepting the
changes needed in behaviour, which have to be overcome in therapy”.
Significantly, the job descriptions also stated that for patients with CFS/ME,
“medical intervention is no longer appropriate” and the service is extended
to patients who have mental health problems; the post-holder is expected to
“raise awareness of the approach adopted by the new centres to GPs and other
local service providers”.

That would seem to be blatant proselytising for ME/CFS to be regarded as a

mental disorder.

ME is suffering from inaccurate diagnosis

Janice Storey and Margaret Williams.

Biologist: June 2003:50: (3):104

This item in the “Letterbox” section of the Biologist stressed the need for
accurate diagnosis and classification in ME; it drew attention to the published
international evidence of a variety of biomarkers for the disorder and
highlighted the fact that certain UK grant-awarding bodies are ignoring the
large body of evidence of organic pathology in ME, preferring to allocate
research funding to re-evaluate psychological management strategies that are
more appropriate to aberrant illness belief.

Notes on the involvement of Wessely et al with the Insurance Industry and

how they deal with ME/CFS claims

Margaret Williams 17th June 2003

This referenced 21 page document considers the disastrous situation in relation

to ME/CFS claims and the insurance industry: it provides evidence of the
involvement of psychiatrists of the Wessely School as well as demonstrating the
effects of this involvement on those with ME.

In the document, we noted that when an MP requires information about

ME/CFS, s/he usually turns to the House of Commons Library; however, it is
known that an MP is often provided with information that is selected by House
of Commons Library staff and a survey showed that MPs are provided only
with information endorsing a psychiatric aetiology (even though books, journals
and international conference reports etc that demonstrate the organic nature of
the disorder are known to have been placed in the Library for the use of MPs,
including Dr Byron Hyde’s 724 page textbook). When the reason for this
selectivity was legitimately queried, an MP’s constituent received an angry and
intimidating letter from the Head of the House of Commons Library. We noted
that this seemed to indicate the immediate State / Government response when
people dare to ask how an MP is provided with information about ME/CFS.
The same control of information seems to apply to the House of Lords, because
a peer has ascertained that the information supporting an organic basis for
ME/CFS has been removed to the Library archives, so is not available unless
specifically requested. Unless people know what is in the archives by name, it
is difficult for them to request such information.

The document contains Appendices that set out actual case histories of
individuals’ struggles with their insurers, including hard evidence of the
coercion tactics used by insurers to force claimants to be seen by Wessely
School psychiatrists, particularly Professor Michael Sharpe himself.
A further Appendix contains quotations from the published works and spoken
views of Professor Michael Sharpe on the subject of ME/CFS (see below).

Spin Wins?

Margaret Williams 26th July 2003

This short document noted that that MRC had openly declared its hand by
categorically asserting (quote): “CFS/ME does not refer to a specific
diagnosis”. It noted that the undifferentiated term “CFS” is an umbrella term
that encompasses many disorders that are not ME (one such disorder being
medically unexplained fatigue, which has no resemblance to ME), and it asked
the MRC on what evidence it over-ruled the WHO classification of ME as a
neurological disorder. It noted that it is not sufficient for the spinners at the
MRC to claim that ME is nothing more than collusion between suggestible
patients and naïve doctors who accept that such patients have a severe physical
illness because the evidence is there for all to see, including the evidence that
ME can be induced both by viruses (as in past epidemics) and by chemicals, and
that its incidence is spiralling out of control.

The document noted that “spin” itself is now spinning out of control, because as
far as ME is concerned, it is rampant throughout UK medicine, thanks to the
unremitting efforts of certain psychiatrists who have indisputable links to the
insurance and pharmaceutical industries, industries which stand to gain
financially from the imposition of psychological regimes of CBT, graded
exercise and antidepressants upon ME patients, many of whom are already at
the limits of their endurance, but who are left in no doubt whatever that if they
do not comply, their benefits will be stopped, either by the State or by their
insurance company (and the financial gains of the psychiatrists themselves
should not be forgotten either, for they are known to act as medical advisers to
insurance companies that include UNUM, Swiss Life, Canada Life, Norwich
Union, Allied Dunbar, Sun Alliance, Skandia, Zurich Life, Permanent
Insurance, and the massive re-insurer Swiss Re).

The document noted that for the spinners who control Government policy on
ME to continue to deliberately harm such people by denying the existing
evidence of biomarkers of serious organic pathoaetiology shows that the
spinners can have no morality, compassion, decency, integrity or humanity.

The views of the Medical Research Council on ME/CFS peer-reviewed

publications

Margaret Williams 27th September 2003

Following an article on 27th September 2003 by Jerome Burne in the Times that
questioned the MRC RAG Report’s recommendations, our document drew
renewed attention to one of the more fallacious claims contained in the MRC
RAG Report, which stated that findings in the biological area of CFS/ME are
generally “not published in the peer-reviewed literature”, nor are such articles
“well-described”.

In our response to the MRC RAG draft document for public consultation, we
had listed 65 mainstream (mostly peer-reviewed) journals that had all published
important biomedical evidence in relation to ME: those prestigious journals
include some with a high impact factor, such as Nature, which has an impact
factor of 29, and the New England Journal of Medicine, which also has an
impact factor of 29. (In science and medicine, journals are allocated an “impact
factor”; as a general rule, journals with a high impact factor are amongst the
most prestigious and are relied upon by funding bodies and policy-makers).
Other journals we listed included JAMA, Annals of Internal Medicine, Reviews
of Infectious Diseases, CRC Critical Reviews in Neurobiology, Archives of
Internal Medicine, Quarterly Journal of Medicine and many more, thus
exposing the erroneous and infantile assertions of the MRC RAG Report .

The document was ignored, just as our original submission as part of the MRC
“consultation process” had been ignored.

The Mental Health Movement: Persecution of Patients? Briefing Paper for

the House of Commons Select Health Committee

Document prepared for the Countess of Mar by Professor Malcolm Hooper, in

collaboration with members of the ME community. December 2003

This comprehensively referenced 75 page spiral bound volume was prepared for
the House of Commons Health Select Committee which, following a meeting
on 24th March 2004 of its then Chairman (David Hinchliffe MP) with the
Countess of Mar, was to have considered the whole issue of ME/CFS: at that
meeting, Hinchliffe had shown himself to be appalled at the situation and
seemed very keen to take the matter forward via his Committee, promising in
person that this would happen and that he would take advice, but just a few days
later, someone (not Hinchliffe himself) contacted Lady Mar to say that it would
not be possible for the Select Health Committee to consider the issue of
ME/CFS.

The prepared document asked if it is the case, as demonstrated in a recent TV

documentary, that multi-national corporations and not governments now rule
the world, and if powerful and influential psychiatrists who work within the
Mental Health Movement are linked to these corporations that now dominate
and control medical and research institutions and whose life-blood is profit?

The document presented evidence to show that:

 In the UK, patients with ME/CFS, particularly children, have suffered gross
and barbaric abuse and persistent denigration as a consequence of the beliefs of
certain psychiatrists who are attempting to control the national agenda for this
complex and severe neuro-immunological disorder, who by their words and
deeds have wreaked havoc in the lives of ME/CFS patients by their arrogant
pursuit of a psychiatric construct that ignores the abundant scientific and
medical evidence of organic pathology

 There have been persistent and frequently covert attempts by these

psychiatrists to subvert the international classification of ME/CFS from
neurological to psychiatric, with destructive consequences for those affected

 These psychiatrists have propagated untruths and falsehoods about the

disorder to the medical, legal, insurance and media communities, as well as to
Government Ministers and to Members of Parliament, resulting in the
withdrawal and erosion of both social and financial support for those with
ME/CFS

 Influenced by these psychiatrists, Government bodies such as the MRC have

continued to propagate the same falsehoods, with the result that patients are left
without any hope of appropriate health service provision or delivery.

The document asked the Select Health Committee to address two specific
questions: (i) is the Department of Health’s current and proposed policy on the
management of ME/CFS as provided and promoted by psychiatrists of the
Wessely School harmful to patients and (ii) are such patients being abused as a
consequence of scientific misconduct?

It pointed out that merely to state that there is “medical disagreement” over
ME/CFS is not enough, as people with power are misusing that power against
sick and vulnerable people and are using it to further their own vested interests,
and that no-one in authority is listening.

The document spelled out the tactics of denial used by Wessely School
psychiatrists, demonstrating especially how the denial is directed at
undermining the expertise of doctors who hold different views about ME/CFS
from themselves, and how the deniers apply a double standard to the evidence –
they support their own claims with a select choice of studies that have been
shown in the medical literature to be flawed, whilst insisting that those who
oppose them provide irrefutable proof of an organic pathology (which when
provided, they simply ignore).

The document provided two Appendices containing quotations from the

published works of Professor Simon Wessely and Professor Michael Sharpe on
ME/CFS, those from Wessely’s works covering the period from 1988 to 2003
and those from Sharpe covering the period from 1991 to 2000, the latter
including Sharpe’s better-known quotations, for example: “psychiatric
management may be defined as treatment of the mentally ill”; “viral infection is
of theoretical interest but of minor importance”; “personality factors (attitudes,
beliefs, thoughts) and behaviour have been shown to perpetuate disability.
These dysfunctional cognitions include the beliefs that recovery is not under
personal control”; “the exclusion of persons (with psychiatric disorders) would
substantially hinder efforts to clarify the role that psychiatric disorders have in
fatiguing illness”; “evidence for the superiority of CBT is in keeping with the
evidence that the perpetuation of unexplained somatic symptoms is best
understood in terms of psychological factors (such as) misinterpetation of
bodily sensations and unhelpful coping behaviour”; “(patients’) beliefs are
targets for therapeutic interventions”; “many physicians are reluctant to make
the diagnosis of CFS (because of) reinforcing unhelpful illness beliefs”;
“patients need a diagnosis in order to organise their dealings with the world of
benefits”; “CFS may serve as a culturally defined function which allows a
socially acceptable expression of distress”; “referral to ‘specialists’ should be
avoided as they can entrench illness behaviour” (presumably Sharpe here
excludes referrals to psychiatrists).

Sharpe is known to have recommended to medical insurance companies that

claimants with ME/CFS should be subjects of covert video surveillance, whilst
in its “Chronic Fatigue Syndrome Management Plan”, the insurance company
UNUM (with which Sharpe is closely involved) proclaims about “CFS”:
“DIAGNOSIS: neurosis with a new banner”.

Sharpe is also known to have received many letters from ME/CFS patients
themselves, as well as from their despairing carers, to one of whom he replied
on 25th April 2000: “Whilst I understand your desire to have the condition
classified as a Neurological Disorder, as I said previously I am not convinced
this is in fact the best strategy. This is because trying to change doctor’s
behaviour (sic) by altering classifications probably will not work and might
even provoke a paradoxical response. I suspect that (your tactics) are as likely
to backfire as to further the cause of obtaining better treatment for patients”.
This response from Sharpe is curious, given that ME has been formally
classified as a neurological disorder since 1969, a fact of which this influential
“expert” seemed to be unaware.

The document pointed out that as with Wessely, it is not just a matter of noting
the more offensive statements but rather it is the relentlessness of the same
message over and over again, and the fact that the message does not adapt to –
but actively dismisses – the strength of emerging biological evidence which
shows these psychiatrists to be out of touch with international scientific
knowledge about the disorder.

2004

Comparison of MRC-funded research and MERGE-funded research into

ME/CFS

Margaret Williams 20th March 2004

This document briefly compared the usefulness of the psychosocial studies of

CBT that are to be funded by £2.6 million with the outstanding work that the
small charity MERGE (ME Research Group) has successfully funded from
donations, noting about the former that the 25% ME Group for the Severely
Affected stated “there is little or no evidence to support the claim that ME
patients will benefit from the highly controversial and hotly contested
psychological treatment strategies”.

By comparison, MERGE is dedicated to biomedical research into the causes,

consequences and treatment of ME, and despite being desperately short of
funding has already achieved far more in furthering the understanding of
ME/CFS since its inception in 2000 than the MRC has achieved in the last 20
years.

Our document summarised MERGE’s presentations at a Royal Society of

Edinburgh Workshop held on 3rd October 2003:

Everyday in the UK, between 120,000 and 240,000 people waken with
debilitating malaise and pain; they remain ill and largely ignored by mainstream
medicine. Graded exercise therapy is not universally successful in ME/CFS.
The human cost of ME is substantial and has not been well reported. A range of
abnormalities has been found in ME by a number of different research groups
(biochemical, vascular, brain and muscle). The microvascular research
laboratory at Dundee has demonstrated that the vascular response in ME is very
unusual and is unlike any other diseases encountered. There may be re-
perfusion injury in ME patients (a state where the vasodilatation that is
necessary for the delivery of nutrients is compromised). Vascular symptoms
characterise ME and data show that arterial stiffening is increased in some
patients with ME. Blood vessels of patients with ME have been shown to be
abnormally sensitive to acetlycholine, a most unusual if not unique situation.
The central hypothesis is that there is endothelial dysfunction in ME: circulating
levels of endothelin-1 (one of the most powerful vasoconstrictors) have been
shown to be raised in people with ME (high levels have been reported in
myocardial infarction, in diabetes and in HIV infection). The symptoms of
post-exertional myalgia in ME may be akin to those experienced by the vascular
patients with intermittent claudication. These findings are suggestive of an
underlying viral or toxic illness associated with persistent infection and
immune activation.

The document asked what possible justification can the MRC and Government
have for continuing to ignore the pleas for funding research into the biomedical
aspects of ME/CFS, whilst continuing to fund yet more psychiatric “research”,
the aim of which seems to be to deny the organic nature of such a uniquely
complex organic disorder.

Some questions about ME/CFS to which credible answers are urgently

required

Malcolm Hooper Margaret Williams 22nd March 2004

This document was prepared for the Countess of Mar’s various meetings with
the Chief Executive of the MRC (Professor Colin Blakemore), MPs and
Ministers; it set out the many problems with the CMO’s Working Group on
“CFS/ME”, as well as problems with the MRC and with NICE (National
Institute for Clinical Excellence, whom both the CMO and the MRC have asked
to develop clinical guidelines for the diagnosis and management of “CFS/ME”).

In relation to the MRC, the document asked how the MRC can possibly justify
the granting of millions of pounds sterling to Wessely School psychiatrists,
given that their work has been universally shown to be flawed, and given also
that they themselves concede that for those with ME/CFS who have taken part
in their trials of CBT and graded exercise, there is no lasting benefit at follow-
up.

It asked how the MRC could be unconcerned that the PACE trials run by
Professors Peter White, Michael Sharpe and Simon Wessely are to use the
Oxford 1991 (psychiatric) criteria for “CFS”, given that those criteria have been
shown to have no predictive validity and have never been adopted
internationally and, most importantly, when they specifically include those with
chronic fatigue due to psychiatric disorders and specifically exclude those with
any neurological signs (such as occur in authentic ME); we drew attention to the
reason given in the Trial Identifier itself: “We chose those broad criteria in
order to enhance recruitment” and we asked how this can be “evidence-based
medicine”?

We expressed concern that these Trials are to include those with fibromyalgia
(FM), given that FM is classified by the WHO as a distinct entity (ICD-
10:M79), whereas ME is classified at G93.3, and given that FM has a discrete
biomedical profile that is entirely distinct from that found in ME/CFS. We
provided evidence that the Government already recognises FM to be a quite
separate disorder, and we asked how can the deliberate inclusion of patients
with FM not result in skewed and meaningless conclusions when the patients
being entered into the MRC trials are, from the outset, not clearly defined?

(It is the case that at a meeting of the All Party Parliamentary Group on
Fibromyalgia held on 12th May 2004 at the House of Commons, the
Parliamentary Under Secretary of State at the Department of Health [Dr
Stephen Ladyman MP] announced that GPs would be offered financial
incentives and encouraged to identify patients with fibromyalgia and to refer
them to the new “CFS/ME” centres, where these fibromyalgia patients would be
included in the MRC “CFS” study. It remains to be explained how the lumping
together of such a deliberately heterogeneous study population in the MRC
trials can yield accurate and meaningful scientific results, when by virtue of the
chosen entry criteria, [Oxford 1991] those with authentic ME will have been
excluded from the outset [see below], yet despite this, it seems that the results of
the MRC PACE trials on “CFS/ME” are likely to be claimed to relate to those
with ME).

In relation to NICE, we pointed out that NICE funds the “Effective Healthcare”
bulletins which are disseminated throughout the NHS, drawing attention to the
issue on CBT and graded exercise as the management of choice for “CFS/ME”
(see Effective Healthcare 2002: No.7: Vol 4; 23rd May) and asked how, when
the views of NICE have already been established and have been shown to
publicly promote the psychiatric model of “CFS/ME”, NICE can be expected to
produce unbiased advice in the future without losing face?

2005

Problems and Solution?

Eileen Marshal Margaret Williams 23rd February 2005

This document noted that a Radio interview on 22nd February 2005 with
Professor Colin Blakemore (Chief Executive of the MRC) encapsulated the
essence of an iatrogenic problem that since 1987 has compounded the suffering
of those with ME, and noted that if his pronouncements had been on any other
disorder but ME, Blakemore would surely have been pilloried by the media.

Blakemore was asked why the MRC had failed to fund any biomedical research
into ME but instead had funded only psychiatric studies that failed to address
the neurological, cardiological, immunological and other abnormalities
highlighted in international research but ignored in the UK.

His verbatim response was: “I know that this is a very current issue of very
great concern to ME sufferers. I think to concentrate on this question of whether
ME is thought to be a neurological or a psychological condition actually isn’t
going to get us far…I don’t think we should look down our noses at
psychological treatments”.

Our paper commented that his declaration that there is no need to worry about
whether or not the disorder is either psychological or neurological in causation
would seem not to be in accordance with the rigorous approach that is necessary
for progress to be made in medical science, and asked if Blakemore really saw
no need to search vigorously for the cause of ME: if so, why does such an
approach relate only to ME and not to all illnesses whose cause is not yet
known, including cancer, multiple sclerosis and lupus? We asked what is the
purpose of the MRC if not to conduct research into illness that will provide
understanding of (and result in treatment for) that illness?

We noted that Blakemore’s support for the current MRC trials on “CFS/ME”
(that have been widely shown to be flawed from the outset by virtue of the entry
criteria chosen by the psychiatrists who are running the trials, which by
definition exclude those with ME) was disturbing, and that Blakemore was
wrong to state unequivocally that the current MRC trials include those with ME,
as there can be no credible doubt that the Oxford case definition excludes those
with neurological disorders: this was confirmed by psychiatrist Anthony David
(colleague and co-author with Wessely) who referred to the Oxford criteria
shortly after they were published: “British investigators have put forward an
alternative, less strict, operational definition which is essentially chronic
fatigue in the absence of neurological signs (but) with psychiatric symptoms
as common associated features” (AS David. Postviral syndrome and
psychiatry. British Medical Bulletin: 1991:47:4:966-988).

Given that ME has been classified by the WHO as a neurological disorder since
1969, and given also that the UK Minister of Health (Lord Warner) confirmed
on 11th February 2004 in writing that the Department of Health accepts the
correct classification for ME is neurological, we asked how it can be
acceptable for Blakemore to claim that the MRC is funding trials on ME when
evidence abounds that this is untrue, and how he can assert that the MRC needs
“high quality proposals” but then openly support those trials when the inherent
design flaws have (to no avail) been repeatedly brought to the attention of the
MRC?

(This important issue cannot to be ignored: on 15th May 2004 the MRC trial
Principal Investigators, Professors Peter White and Michael Sharpe, posted a
notice “Correcting some misunderstandings” on the Co-Cure internet site in
which they asserted: “The criteria that we will use to include patients with
CFS/ME do not exclude ME”: if the Department of Health accepts that the
WHO classification for ME is neurological [and the same Department of Health
is on record as accepting ME as an organic disorder in November 1987 and as
reiterating this acceptance on 15th March 1992 when the Under Secretary of
State for Health confirmed in writing that “a physical cause for ME is
recognised”, as well as on 16th August 1992, when the Under Secretary of State
for Health stated “ME is established as a medical condition”], and if people with
ME exhibit neurological signs, and if the Oxford MRC trials entry criteria
expressly exclude those with neurological disorder and exclude those with
any physical signs, by what reasoning can those with authentic ME be included
in the MRC trials? The ME Association has called for the MRC trials to be
abandoned and the MRC has been deluged with letters of concern about these
trials, all to no avail. One such letter was from Dr David S, a
psychopharmacologist, who wrote to the MRC saying: “I am appalled to have
to bring to the attention of the MRC that both massage of the diagnostic criteria
and experimental protocol [including the “loss of data” from non-compliers]
appears to be taking place in two areas of research into CFS/ME. These are not
allegations to be taken lightly and I expect the MRC to launch an immediate
investigation”. The question remains: if by definition the MRC trials exclude
those with authentic ME, what is to be provided for the 240,000 people that the
Government says suffers from CFS/ME, about whom Lord Warner has made
the Government’s position quite clear, and who will benefit from the £11.1
million granted to Wessely School psychiatrists?).

Science or Psychology?

Margaret Williams 29th March 2005

While the furore over the MRC trials entry criteria raged on, an equally if not
more disturbing concern about these trials was raised again, namely that they
might be detrimental and even dangerous for those with authentic ME: whilst
Simon Wessely was busy promoting his meta-analysis of the placebo response
in CFS as reported on 22nd March 2005 in the Washington Post (“Researchers
say people need to be convinced that behavioural therapy and regular exercise
can help them overcome symptoms of chronic fatigue syndrome”), scientists
were publishing results that showed such regimes exacerbate the symptoms in
ME/CFS.

This document noted the impressive and significant study by US researchers

from the Centres for Disease Control in Atlanta, including world experts such as
James F Jones and Suzanne D Vernon (BMC Physiology: 2005:5:5), which was
unequivocal: using gene profiling, they found that “Activities that are
physiologic stressors, such as physical exercise, exacerbate the symptoms
that define ME/CFS. It is evident that ion transport and ion channel
activity segregate cases from controls and that exercise seems to intensify
these differences. Several other conditions have been reported that are
known to be caused by abnormal ion channels. These conditions include
multiple sclerosis and polyneuropathies”.

As ever, the MRC did not acknowledge this document.

Profits before Patients?

Eileen Marshall Margaret Williams 15th April 2005

Because the MRC trials include compulsory aerobic exercise (even though the
deleterious effects of such exercise on those with ME are well documented in
the medical literature), we once again drew attention to this, pointing out that it
was as long ago as 1988 that there was “general agreement that (ME’s)
distinguishing characteristic is severe muscle fatigability, made worse by
exercise. It becomes apparent that any kind of muscle exercise can cause
patients to be almost incapacitated (and) the patient is usually confined to
bed. What is certain is that it becomes plain that this is an organic illness
in which muscle metabolism is severely affected” (Crit Rev Neurobiol:
1988:4:2:157-178).

We noted that the MRC has resolutely refused to heed submitted concerns about
the potential dangers of the PACE trials to those with ME, and that even when
sent by Recorded Delivery, these concerns are not acknowledged, let alone
addressed.

We again drew attention to the fact that the potential danger is not only because
exercise – especially aerobic exercise – is known to cause significant general
deterioration and increased pain in those with ME/CFS: it is because those trials
involve graded aerobic exercise in patients who may have serious cardiac
problems.
Cardiac problems in ME have been documented in the medical literature for
over half a century, and our document provided credible references, including
evidence that all disabled ME/CFS patients are in heart failure.

We asked if this evidence was deemed to be inconvenient in the UK because it

does not accord with Government’s preferred policy of off-loading as cheaply
as possible the ever-increasing numbers of chronically sick who have no
commercial value to the State but who cost it far too much money?

High Standards at the MRC?

Eileen Marshall Margaret Williams 21st April 2005

This document drew attention to a reply sent to Neil Brown by Simon Burden of
the MRC, which once again raised the issue of the MRC trial entry criteria.

Firstly, Simon Burden wrote: “When researchers put together a proposal they
are required to define the population they are studying”: we asked why this does
not apply to the CFS/ME trials, pointing out that if those involved with the trials
adhere (as required) to the Trial Identifier and select their participants by using
the stated criteria (the Oxford criteria), then by definition as set out in the
Oxford criteria themselves, those with ME will be excluded from the start, and
this is unequivocal.

If there is no such strict adherence to the entry criteria, then the results will be
flawed from the outset and therefore meaningless: either the entry criteria are
adhered to, or the results will be flawed; there is no other scientifically credible
interpretation.

We asked how this accords with the MRC’s apparent requirement for “the high
scientific standard required for funding”?

The other notable point in Simon Burden’s letter stated: “Research proposals in
all areas must demonstrate that the research will contribute to maintaining and
improving health”: we noted that if this is so, then why are exceptions being
made in the case of ME patients, and asked how can deliberately putting
participants at risk of deterioration by virtue of compulsory graded exercise
(however it is administered) be guaranteed not to be harmful, and does such
known risk constitute (quote) “maintaining and improving health”?

(It needs to be noted that all trial participants are required to sign a no-liability
clause).
We asked the MRC to confirm that, as part of its requirement for “high
standards”, all participants in the CFS/ME trials will first be screened by means
of impedance cardiography to eliminate this very real risk.

We received no reply from the MRC.

Vilified but Vindicated?

Malcolm Hooper Eileen Marshall Margaret Williams 29th April 2005

This 8 page document noted that ME/CFS sufferers have for many years been
unjustly subjected to assertions that they suffer not from an organic condition
but from either depression or from somatisation disorder, and that such
assertions have been promulgated mainly by adherents of the Wessely School.

We drew attention to a 30 page review by Professor Leonard Jason et al from

DePaul University, Chicago, that exposed the lack of evidence for such
assertions and makes it imperative that the currently advocated management
regime propounded by Wessely that is supported by the MRC and funded by
Government be held to rigorous scrutiny, since that regime avoids the cardinal
issues surrounding ME/CFS and leaves many very sick people with no hope of
correct treatment or support.

Significantly, Jason’s review extinguishes Wessely’s beliefs as unsustainable

assumption (but it is those beliefs that are currently driving all UK NHS
provision for those with ME/CFS).

We once again noted that the total inadequacy of the psychiatric approach has
been repeatedly pointed out to the CMO and to the MRC by us and by others,
many of whom emphasised the pressing need for studying sub-groups of “CFS”,
and Jason (an undisputed world expert on the disorder) makes the point that
such sub-grouping is henceforth essential.

Specifically, Jason stated “Because the findings of British (psychiatric)

studies have been widely disseminated, it is not uncommon for medical
practitioners to encourage patients with (ME)CFS to begin an exercise
programme and to challenge their beliefs about the medical aetiology of
their disorder. CFS represents a heterogeneous syndrome and the lack of
consistency in studies might very well be a failure to routinely classify CFS
into subtypes. Currently there is a need for investigators to develop
subtypes. Most importantly, misdiagnosis may lead to improper treatment
and in cases of severe illness, the matter of an incorrect diagnosis can have
serious consequences. If there is limited reliability of the diagnostic groups
studied because of the failure to attend to subtype differences, the results of
any study using such diagnostic categories are likely to be unreliable or
invalid”.

It will be recalled that we had repeatedly brought the need for sub-grouping of
the heterogeneous label “CFS” to the attention of the CMO’s Working Group
because the various drafts of the report stipulated that sub-grouping was
unnecessary and was simply a matter of “semantics” (the view that prevailed in
the final report).

In this document we pointed out that, persistently uninfluenced by scientific

evidence (and because their unauthorised attempt to reclassify ME as a mental
disorder in the WHO Guide to Mental Health in Primary Care was eventually
thwarted by members of the UK ME community), Wessely School psychiatrists
and their paymasters are currently endeavouring to convince the compilers of
the next Diagnostic and Statistical Manual revision (DSM-V, the mental health
“bible” that takes precedence over the WHO International Classification of
Diseases) to include a new category of “functional somatic syndromes” into
which “CFS” would be placed, and “CFS/ME”would thereby become an
officially classified mental disorder.

Warning: UK Prime Minister’s Strategy Unit on Mental Health

Eileen Marshall Margaret Williams 26th May 2005

This document drew attention to the Prime Minister’s Strategy Unit’s proposals
that people with what are deemed to be “mental” illnesses must “surrender a
degree of sovereignty over their mental life”, and that their “notions of
autonomy may be fundamentally diminished” (as reported by David
Wainwright in an item from “spiked online” entitled “Workers behaving
badly”).

We quoted Wainwright: “The UK is mobilising an army of psychotherapists to

get people off Incapacity Benefit. The therapeutic apparatus of the British state
is poised to undergo a rapid and far-reaching expansion. At a recent meeting of
the Prime Minister’s Strategy Unit, the following were proposed: five thousand
extra psychotherapists to be trained in Cognitive Behavioural Therapy; a
doubling of the number of psychiatrists, and all new GPs to receive
training in psychiatry focusing on treatment of depression and anxiety in
the community”.

We noted that the recent promise of the UK Government to create 7,500 new
consultant psychiatric posts is already on record (see European Doctors:
Psychiatry in the National Health Service: http://www.europeandoctors.co.uk ).
We noted that it seems that people who were previously accepted by the
Government as being physically sick but who are now deemed to be “mentally”
sick are not to be tolerated, especially those who are said to suffer from “the
creation of ‘diseases’ like chronic fatigue syndrome for which no evidence
of pathology can be found”.

We drew attention to worrying reports that are already emerging about the new
Government centres for “CFS/ME”, notably that if patients withdraw, they will
automatically lose their rights to state benefit, and to the fact that CBT is being
used to brain-wash patients into accepting that their pain, malaise, gut problems
and allergies are simply somatisation and that symptoms will resolve once the
correct mode of thinking is achieved. There is also a worrying obsession with
patients’ sex lives and there is a refusal to refer people to a pain clinic or to
offer any care other than anti-depressants.

(There is evidence in abundance of the impact and effects of this strategy, but
attention is drawn to just one example that came to light as a result of an inquiry
from an MP on behalf of a constituent with severe ME: in response to a request
for a domiciliary visit from the constituent’s GP, on 14th October 2003 an NHS
consultant immunologist who has been seeing patients with ME/CFS over a
considerable area of the UK wrote to the referring GP: “I have seen him a
number of times since 1998. He has fairly typical CFS but has maintained
beliefs in the condition which I do not think have helped himself (sic) recover.
The management of this condition is primarily about trying to get and maintain
these patients as active as possible. If I do a DV (domiciliary visit) then I am
condoning his management of his condition (so) I do not feel a DV is
appropriate”. Given that this was written by an immunologist who
“specialised” in ME/CFS, it would seem to be a classic example of the effects
of Wessely School propaganda).

We noted that it is true that “altered medical perception” surrounds and dogs
ME (a claim disparagingly made by Wessely School psychiatrists about those
doctors who support their ME patients) but that those who display this altered
medical perception are in reality Wessely School psychiatrists themselves
because they perceive only what they want to perceive by reducing the complex
multi-system organic disorder that is ME to mere fatigue, aberrant illness beliefs
and a defective personality.

Evidence-based Psychiatry?

Eileen Marshall Margaret Williams 11th June 2005

This document drew attention to the CFS Research Foundation Newsletter 10,
November 2004, and to the fact that bona fide research has indicated that in
those with ME/CFS there are more gene abnormalities present than are found in
cancer sufferers.

We pointed out that there can no longer be any doubt that in ME/CFS there are
proven abnormalities in numerous genes, and that such abnormalities are
acquired as the result of interactions with the environment as opposed to being
hereditary.

Gene expression describes the behaviour of certain genes when attacked by an

infection or other insult: some genes become over-active and produce chemicals
that cause symptoms seen in ME/CFS, while other genes become under-active
or shut down.

The work of US immunologist Roberto Patarca-Monterro illustrates how

changes in just one single gene can have wide-ranging consequences: he has
identified an abnormal gene in ME/CFS patients that is multi-factorial, affecting
the immune response to infection and the regulation of calcium and phosphate
in bone metabolism and the expression of autoimmune disease. His gene
studies also reveal consequences within the cardiovascular system, with
potential implications for the ability to exercise without biological
consequences that are damaging.

We recalled what another world-renowned immunologist who specialises in the

disorder, Professor Nancy Klimas from the University of Miami, said in her in-
coming AACFS Presidential Address in March 2005: “Our patients are
terribly ill, misunderstood, and suffer at the hands of a poorly informed
medical establishment and society”.

We also recalled a 1992 description of ME/CFS by the Canadian expert Dr

Byron Hyde: “ME/CFS represents a major acquired CNS (central nervous
system) dysfunction. This persisting multi-level CNS dysfunction defines
the nature of the disease process. The majority of symptoms can only be
attributed to a CNS or muscle pathology”.

Since 1938, there have been thousands of published papers in the medical and
scientific literature that document biological abnormalities in ME/CFS, and no-
one who is aware of this wealth of information can doubt the reality, the validity
and the devastation of this organic multi-system disease.

As Hyde noted, it is the failure of those who are psychiatrically biased to return
to the literature that haunts the very basis of their own case definition of “CFS”
and their insistence that it is a “mistaken illness belief”.

Questions for the MRC

Eileen Marshall Margaret Williams 18th June 2005

As a result of a letter dated 16th June 2005 from Dr Sarah Perkins (whose title is
Programme Manager, MRC Neurosciences and Mental Health Board), this
document once again considered the entry criteria for the MRC CFS trials.

Because Dr Perkins had written: “The main entry criteria for the PACE trial are
the Oxford criteria. The exclusion criteria of ‘proven organic brain disease’ will
be used to exclude neurological conditions of established anatomical pathology
such as multiple sclerosis. It will not be used to exclude patients with a
diagnosis of ME”, we asked the MRC some basic questions:

 Why the MRC is adopting special pleading in relation to ME, when ME is a

classified neurological disorder in the World Health Organisation International
Classification of Diseases and has been so classified since 1969

 On what scientific evidence is the MRC relying to enable it to disregard this

international classification that has been approved by the World Health
Assembly

 On what evidence-base is the MRC relying to permit it to disregard

recognised research procedure by implementing its own selective modification
of the Oxford entry criteria

 Why is it acceptable for the MRC to disregard the substantive body of

scientific evidence of neurological compromise in ME in favour of
unsubstantiated beliefs of certain psychiatrists

 Given that in 2003 Members of Parliament so excoriatingly criticised the

work of the MRC (see House of Commons Science and Technology Select
Committee: the Work of the Medical Research Council: Third Report of
Session 2002-03, 24th March 2003: HC132), why is the MRC content to
continue to support policies and fund projects that are likely to perpetuate such
criticism

 In view of the submissions for the funding of biomedical aspects of ME/CFS

that the MRC is known to have rejected on the claimed grounds that they were
not of sufficiently rigorous quality, what is the explanation for the seemingly
more lax standards required for psychiatric research projects such as the CFS
trial

The document noted that members of the long-suffering ME community may

require their respective Members of Parliament to seek until they obtain
believable explanations for such remarkable discrepancies.
Politically Modified Research?

Eileen Marshall Margaret Williams 25th June 2005

This document noted that on 22nd June 2005 Laurie Taylor presented a
programme on BBC Radio 4 called “Thinking Allowed”, which Taylor ended
with a momentous statement: “The last word must go to the anonymous
political insider who recently characterised the present Government’s approach
to research in the following manner: it is not, he said, so much evidence-
based policy-making as policy-based evidence-making”.

That quotation is momentous because it exactly encapsulates the reality: forces

are at work that are beyond belief – forces that are intent on “eradicating” both
ME and those medical practitioners who support their patients’ belief that it is
an organic disorder and who, in the absence of any helpful orthodox
interventions, do their best to provide complementary interventions.

The document noted that physicians who genuinely try to help those with ME
are themselves victimised, in some cases being reported to the General Medical
Council by HealthWatch activists, and it provided a named example.

We noted that after the publication in 1996 of the internationally criticised Joint
Royal Colleges’ Report on CFS, of which Professor Simon Wessely was known
to be the prime mover, the Editor of the Lancet (Dr Richard Horton)
courageously spoke out against it, saying on the record: “The college
representatives interpreted every piece of evidence pointing to a biological
cause in a negative light”.

We noted that Horton has won plaudits for his scrutiny of the pharmaceutical
industry and that his stance has made enemies, and that more than once Horton
has been targeted for his principles, the latest being on 18th June 2005 when he
was the subject of a vitriolic attack in The Times from “Establishment”
scientists.

Of particular interest to the ME community was that one of the signatories was
neuroscientist Dame Nancy Rothwell, the same Professor Rothwell who chaired
the MRC Research Advisory Group (RAG) on the direction of future research
into “CFS/ME”.

We noted that the same edition of The Times carried an item by Tracy Brown
that promoted a Discussion Paper extolling the virtues of the peer-review
system in the protection of the public. Being aware of the extent of published
academic unrest about corruption of the peer-review system, this merited further
investigation, which revealed that Tracy Brown is Director of an organisation
called Sense about Science, a registered charity whose aim seems to be to
“educate” the public so that it unquestioningly accepts industry’s agenda for
ever-tighter control of the nation’s health.

We also noted that apart from Tracy Brown herself, other members of the Sense
about Science Working Group that produced the Discussion Paper on peer
review included Professor Colin Blakemore, currently Chief Executive of the
Medical Research Council, and Fiona Fox, Director of the Science Media
Centre (a sibling organisation of Sense about Science), whose Science Advisory
Panel includes Professor Simon Wessely.

We noted that the Science Media Centre is funded by pharmaceutical

companies and that Fiona Fox has used it to promote the views of industry and
to launch fierce attacks against those who question them. Perhaps surprisingly,
the Royal College of Physicians (RCP) is a sponsor of the Science Media
Centre (although perhaps this is not so surprising when one knows that a past
President of the RCP, Professor Sir George Alberti, also sits with Wessely on
the Science Media Centre’s Advisory Panel).

We further noted the Science Media Centre’s links to the online magazine
“spiked” whose health writer is (as mentioned above) Dr Mike Fitzpatrick of
HealthWatch.

(We subsequently noted that the cost of printing the Discussion Paper from
Sense about Science was met by the Medical Research Council, and that Dr
Mike Fitzpatrick sits on the Board of Trustees of Sense about Science).

We noted that even though Wessely School psychiatrists had walked out of the
CMO’s Working Group and did not endorse the final report because it did not
categorically affirm “CFS/ME” to be a psychosocial (behavioural) disorder as
they believe and assert, it is those very same psychiatrists who are now being
awarded massive funding by the MRC to do what they wanted the CMO’s
report to recommend and who are also calling the shots in the new Government-
funded centres for “CFS/ME”.

Another Meadow?

Eileen Marshall Margaret Williams 15th July 2005

In this document, we noted that paediatrician Professor Sir Roy Meadow had
been struck off the medical register by the UK General Medical Council and
that his claims to be a world expert were in ruins, proving that even an
acclaimed “expert” is sometimes not to be relied upon and that all such
“experts” need to be rigorously questioned about the source of their “evidence”.
We quoted what the Chairman of the GMC panel said to Meadow: “Your
misguided belief in the truth of your arguments is both disturbing and serious”
and, significantly: “You should not have strayed into areas that were not within
your remit of expertise”.

We noted that the issue of medical “experts” who are certain they are right is
not confined to paediatrics, and we noted parallels in other disputed areas of
medicine.

We pointed out that Professor Simon Wessely is certain that ME does not exist
except as a false belief and that, like Meadow, he is absolutely certain that he is
right and that he, even more than Meadow, compounds his views by repetition
ad infinitum.

We noted that, like Meadow, Wessely promotes himself as a “world expert” on

“CFS/ME” and we asked if it is not time for his status as “world expert” to be
challenged in the way that Meadow’s status was eventually challenged, because
the harm that has flowed from Wessely’s unsubstantiated beliefs seems to be
incalculable, with the number of children suffering from severe ME who are
being forcibly removed from their homes and being placed in locked psychiatric
institutions now amounting to what one NHS consultant paediatrician (Dr Nigel
Speight) referred to as an “epidemic”.

We pointed out that for over a decade, questions about possible scientific
misconduct and flawed methodology by Wessely in relation to ME/CFS have
been raised and published in international medical journals.

We noted that Wessely is a psychiatrist, so it follows that areas of complex

medical science such as immunology, vascular medicine and muscle pathology
are, to quote again what the Chairman of the GMC Inquiry said to Meadow:
“not within your remit of expertise”; this being so, we asked why is it
acceptable for Wessely to function outside his remit of expertise, but not
Meadow?

We asked how much of the Wessely School theories are based on science and
why Wessely has never addressed the massive amount of credible research
evidence that shows him to be comprehensively wrong about the nature, cause
and management of ME/CFS.

We noted that the GMC regarded Meadow’s unevidenced certainty that he was
right as (quote) “fundamentally unacceptable” conduct, and we queried what the
GMC might say about Wessely’s equally unevidenced certainty that he is right
about ME.
ME: Organic or Psychiatric ---Decision Time?

Eileen Marshall Margaret Williams 2nd August 2005

This short document compared two opposing tenets about ME/CFS from the
two different camps.

We noted the prime significance of the paper from the stable of Professor
Stephen Holgate from the Department of Immunopharmacology at
Southampton, where Dr Jonathan Kerr’s team concluded that patients with
ME/CFS have reproducible alterations in gene regulation, and that sixteen genes
have an expression profile associated with the disorder that can be grouped
according to immune, neuronal, mitochondrial and other functions. A neuronal
component was identified that is associated with central nervous system
hypomyelination and encephalopathy, and the authors stated: “The involvement
of genes from several disparate pathways suggests a complex pathogenesis
(and) possible molecular bases for the recognised contributions of
organophosphate exposure and virus infection, respectively”.

We compared this with the other --simultaneous -- presentation that came from
Professor Michael Sharpe (who now holds a Personal Chair in Psychology at
the University of Edinburgh and whose inaugural lecture on 12th May 2005
happened to take place on National ME Awareness Day); Sharpe’s lecture was
entitled “The Science of the Art of Medicine” and might be summarised as
being “How to treat diseases with no pathology”, in which he firmly included
“CFS/ME”.

We noted that in publicly releasing his power-point presentation electronically,

Sharpe seems to have revealed his real disdain for those suffering from
ME/CFS, because submerged within the text is material which seems to
encapsulate his belief that “these patients need to change their attitude”, for
example:

“It is apparent that the attitude of patients suffering from this chronic state must
be changed”.

“The knowledge that experience has shown that certain sensations have resulted
from certain activities must be replaced by a conviction that these efforts may
be made without harm”.

“Modern medical descriptions of symptoms without pathology: ‘all in the

mind’; ‘hysterical’; ‘medically unexplained’; ‘psychosomatic’ ”.
Sharpe seemed to be considering what he called “a psychologically
sophisticated NHS”, within which “patients with symptoms that are unexplained
by disease” present a problem, and he asked “How big is this problem?” and
then answered his own question: “It is a big problem”.

Within his released copy of his power-point presentation, Sharpe also released
confidential information about his patients from which they could (and have
been) identified, including not only their date of birth and address, but also his
own comments, for example: “Putting it on”; “Imagining symptoms”.

We noted that not only does Sharpe apparently dismiss the evidence of serious
organic pathology in ME/CFS and consider it to be no more than an “attitude
that must be changed”, but he apparently has so little respect for his patients that
he failed to take even the most basic care to protect what is clearly confidential
information.

(Following media exposure, it has been announced that Sharpe is to face both a
University and an NHS inquiry about this significant breach of confidentiality).

A Final Farewell to the Psychiatric Fallacy?

Margaret Williams 13th August 2005

This document highlighted the key points of the latest paper from the Vascular
Research Unit at Dundee, findings that could have a significant impact on the
safety of the MRC current CFS trials.

It pointed out that this is the first time that raised levels of isoprostanes (highly
noxious by-products of abnormal cell membrane metabolism) that precisely
correlate with patients’ symptoms have been presented.

As Dr Neil Abbot (Director of Operations at the charity MERGE that funded

the research) stated on the MERGE website (http://www.meresearch.org.uk),
the importance of these findings cannot be overstated.

To quote Abbot: “Circulating in the bloodstream are highly reactive molecules,

known as free radicals, which can cause damage to the cells of the body, a
process called oxidative stress. In healthy people, increases in free radicals are
neutralised by antioxidant defences, and it is only when these defences are
overwhelmed that cell injury results”.

Of particular significance, as Abbot makes clear, is that exercising muscle is a

prime contender for excessive free radical generation: “Recent research has
demonstrated that incremental exercise challenge induces prolonged and
accentuated oxidative stress that might well account for post-exercise symptoms
in ME/CFS patients….many patients currently diagnosed with ME/CFS
could have an inflammatory condition and be in a ‘pro-oxidant’ state”.

The document noted that given so much evidence of serious organic pathology
in ME/CFS, perhaps psychiatrist Professor Michael Sharpe needs to re-think his
previous pronouncement that “Those who cannot be fitted into a scheme of
objective bodily illness yet refuse to be placed into and accept the stigma of
mental illness remain the undeserving sick of our society and our health
service” (see page 1 above).

The document suggested that Wessely School psychiatrists now need to

understand that it is time for them to re-think their obviously out-dated and
potentially damaging approach to those with ME/CFS.

ME: Why No Accountability?

Malcolm Hooper Margaret Williams 18th August 2005

This nine page document was our preliminary submission to the Parliamentary
Inquiry; it set out the problem, the facts and the issues surrounding the maze of
constructed intrigue in relation to ME/CFS.

It also set out our view that those responsible for this unnecessary intrigue must
be held publicly accountable, and it provided a synopsis of some of the issues
that we believe a Parliamentary Inquiry needs to understand and address, not
least because the human rights of people suffering from ME/CFS are being
conspicuously denied without any justification whatsoever.

We posited that it is completely unacceptable that the unsubstantiated personal

beliefs of a few immensely influential psychiatrists with indisputable vested
interests should continue to indoctrinate UK medicine and the media regarding
ME/CFS, and that they should continue to impose inappropriate management
regimes upon sick and defenceless patients on pain of having their benefits
withdrawn (a situation that has continued unabated for far too long).

Proof Positive?

Evidence of the deliberate creation via social constructionism of

“psychosocial” illness by cult indoctrination of State agencies, and the
impact of this on social and welfare policy

Eileen Marshall Margaret Williams 30th August 2005

We regard this ten page document as one of the most important of any we have
produced.

It noted that the UK ME community has for years urged Government bodies to
fund research into the biomedical aspects of ME/CFS, almost always to no
avail, to the extent that the ME community realised that there were powerful
vested interests at stake that were known to involve psychiatrists of the Wessely
School.

Now there is hard evidence of this involvement and it is contained in a book

entitled “Biopsychosocial Medicine: An integrated approach to understanding
illness” published by Oxford University Press (2005) and edited by psychiatrist
Professor Peter White from St Bartholomew’s Hospital, London (Principal
Investigator of the MRC CFS trial).

The book arose out of a two-day conference held at the Novartis

(pharmaceutical) Foundation in London on 31st October and 1st November 2002,
being a joint venture between the Novartis Foundation and a body called One-
Health, said to be a not-for-profit company that (quote) “was established in
order to promote a system of healthcare based on the biopsychosocial model of
ill-health”.

Peter White is Chairman of One-Health; he states that the book was written
because “some people believe that medicine is currently travelling up a ‘blind
alley’ (and) this ‘blind alley’ is the biomedical approach to healthcare. The
biomedical model assumes that ill-health and disability is directly caused by
diseases and their pathological processes (but) there is an alternative approach:
the biopsychosocial approach is one that incorporates thoughts, feelings,
behaviour (and) their social context”.

Twenty-eight “international experts in the field” were invited, many of whom

are already known to the ME/CFS community: apart from Professor Simon
Wessely (who chaired the entire conference), others who have featured in the
fate of those with ME included Professor Michael Sharpe, Professor Trudie
Chalder (a former Registered Mental Nurse who works with Wessely and is
now one of the Principal Investigators of the MRC CFS trials), Dr Mike
Fitzpatrick (referred to above) and Professor Mansel Aylward (then at the
Department of Work and Pensions but recently appointed Chair in Psychosocial
and Disability Research at Cardiff, where he is also Director of the
UNUMProvident Centre for Psychosocial and Disability Research).

Our document quoted extensively from the book and it is strongly

recommended that members of the Parliamentary Inquiry read “Proof Positive?”
for themselves, because it summarises what by any standards is a most
disturbing scenario relating to the health of the British nation, notably the
intended replacement of biomedical science by the wholesale adoption of
psycho-social dogma.

Some illustrations include:

Simon Wessely: “I seem to have spent much of the last decade sitting on grant-
giving bodies. Cognitive behaviour therapy has transformed the management of
many chronic symptomatic conditions. That psychological and social factors
contribute to disease is clear (but) not even Government would dream of
tackling these issues without anchoring policy”.

In response to the question “What are the barriers to healthcare systems using a
biopsychosocial approach and how might they be overcome?”, Professor Kate
Lorig from Stanford, USA, provided some telling answers: when asked by
Professor Mansel Aylward how did she recruit people into the biopsychosocial
model, she replied: “I’d put real marketing experts onto it. Are (people) tired?
If so, come along. We (recruit participants) in churches and community halls.
This past Easter I went to mass twice, and I’m Jewish. Between myself and the
staff we covered 17 masses. We just take their names and addresses and then
call them later. The system has to go to them, you don’t ask them to go to the
system”.

Mike Fitzpatrick: “It is interesting to contrast the approach Kate Lorig is

talking about with what we are familiar with about patient campaigns, which
often have a very activist feel to them, such as the ME campaign”.

Kate Lorig replied: “The two master trainers in the UK both came from patients
groups. We have had virtually no resistance from patient groups”.

(This would seem to accord with Sharpe’s report for UNUM Provident’s
“Trends in Health and Disability” 2002, in which he stated: “There are
glimmers of progress. One of the major patient charities, Action for ME, is
aligning itself with a more evidence-based approach”).

Trudie Chalder (to Kate Lorig): “It is clear that you are a very effective
cognitive behavioural psychotherapist and I want to congratulate you on your
programme. It sounds marvellous”.

Kate Lorig: “We have to develop key messages, which the healthcare system
gives consistently”.
Simon Wessely: “We accept that. This is what we do in treatment
programmes. But we also know that even getting patients to see us is a
challenge because of their fear-avoidance beliefs”.

Peter White: “The biopsychosocial approach is important in addressing

disability associated with all chronic ill-health (including) common disorders
such as chronic fatigue syndrome. Healthcare systems will routinely
incorporate the biopsychosocial approach when convinced of its economic
advantages. Teaching the skills necessary for professionals to feel confident (in
the biopsychosocial approach) is more important than persuading them to ask
the appropriate questions. Because many patients now use the internet for
information on their health, we should make greater use of this medium to get
the right message across”.

Trudie Chalder: “We could make a start with youngsters in schools. My

experience is that they are much easier to educate. The only barrier is the
parents. Once we have the child on our side, we are in a very good position”.

Simon Wessely: “Mansel Aylward, you are involved with policy definitions.
What have you heard here that might influence your Secretary of State?”

Mansel Aylward: “I have been given a lot of information that reinforces some
of the messages that I have passed on to decision makers. We had some great
difficulty last year persuading certain people that the way forward lay with a
biopsychosocial approach. It is very difficult to get the Department of Health,
amongst others in Government, to favour interventions adopting the
biopsychosocial approach, but in recent months I’m beginning to see a change”.

Simon Wessely: “What made some of the policy makers change their views?”

Mansel Aylward: “Systematic reviews of the literature (note that these are
either performed by or are mostly relying on published papers by Wessely
School psychiatrists) to support the biopsychosocial concept. Recent meetings
of focus groups of key opinion makers (now) support – with authoritative and
expert opinion – the value of biopsychosocial approaches. There are going to
be some developments soon”.

Our document noted that Aylward used the term “expert opinion” and not
expert “evidence”.

Greville Mitchell (Patron of One-Health company): “If you go to Gordon

Brown (Chancellor of the Exchequer) and say, ‘We can prove to you that if we
address this issue, we can save £2 billion’, then you have his full attention”.
Mansel Aylward: “That is the approach that has been taken”.

Brian Marien (from the Health Psychology Unit, King Edward VII Hospital,
Midhurst, West Sussex): “I like (the) idea of changing patients’ (beliefs),
because I don’t think we are going to change the professions”.

Mike Fitzpatrick: “The line from the ME Association is that if you, as a GP, say
you are sceptical about the ME label, the Chief Medical Officer has stipulated
how this must be dealt with. This reflects endorsement at the highest level of
policy of a disease label that is not supported by the evidence – it is a
completely irrational formulation”.

Mansel Aylward: “It doesn’t follow that all of that report is supported by
everyone in Government service. The Department of Work and Pensions
doesn’t necessarily endorse all that is in the Working Party’s report to the Chief
Medical Officer. I am also mindful of the views of those who, as members of
that group, distanced themselves from some aspects of the report”.

Mike Fitzpatrick: “Nonetheless, this was the line and it is very much
promulgated that GPs should follow this. It is a consensus forged by excluding
many of the people in this room who have been involved in this area. This
illustrates a big problem: the Government are linking up with patient activist
groups to dictate an approach which is not actually going to be beneficial to
patients”.

Greville Mitchell: “The question in the title of this meeting was whether the
biopsychosocial model is a necessity or a luxury. To me, the answer from this
meeting is that it is clearly a necessity. It has been a brilliant meeting”.

Our document noted that it may have been a “brilliant” meeting as far as most
of the participants were concerned, but it left unanswered a glaring question:
one of the participants (Professor Robert Lewin from the Department of Health
Sciences at York) said “As we all know, cognitive behavioural therapy gains
tend to fade over time”; this being known to be so, we asked how the
psychosocial model that depends on CBT can be sold as being attractive to the
Chancellor of the Exchequer? Is the Chancellor being deceived? If CBT has no
lasting benefit, how can it be cost-effective?

Our document noted that, illuminating as these extracts are, it was the final
discussion that struck the most chilling resonance because it seemed to embody
the deliberate social construction of their own version of reality by these
influential and determined social constructivists: we noted that this is alarming
because there are parallels in comparatively recent history that are forgotten at
humanity’s peril.
It is disturbing that in twenty-first century medicine in the UK, members of the
One-Health company seem intent on rejecting the hard-gained, evidence-based
biomedical model of disease and substituting their own unproven and retrograde
biopsychosocial model that is designed to change people’s beliefs (which they
themselves expediently refer to as “evidence-based”).

Overall, the meeting seems to have crystallised One-Health company members’

clear intention to exert an unchallenged stranglehold over people suffering from
what One-Health company members deem to be “medically unexplained
symptoms”, in that the best interests of such sufferers are seemingly to be
sacrificed on the pecuniary altar of the State by means of a psychiatric regime
with which the propounders themselves just happen to be financially involved.

It certainly leaves those who suffer from the savage disease ME/CFS without
even a modicum of hope.

More Proof Positive?

Eileen Marshall Margaret Williams 4th September 2005

In this document we noted the astonishing response to “Proof Positive?” and

that there is clearly a groundswell of deep unrest within the UK ME community
that indicates the powerful strength of feeling against the repeated failure of
Government policy-makers to heed the significant amount of international
scientific evidence of organic pathology that has already been demonstrated,
and instead to rely on the unproven beliefs of the proponents of the
biopsychosocial model of the disorder who, on their own admission, are
targeting and indoctrinating these Government policy-makers.

From the numerous responses we received, one in particular stood out: it

pointed out that the biopsychosocial model of ME/CFS regards the disorder as a
comprehensively somatisation (psychiatric) disorder, and asked how this sits
with the fact that it was these same psychiatrists themselves (Simon Wessely
and Peter White) who in the 1996 Joint Royal Colleges’ report stated that:

(i) 25-40% of ME/CFS patients do not fulfil the criteria for

psychological disorders (chapter 4 / Summary)

(ii) nearly all studies find that between one-quarter to one-third of those
who fulfil the criteria for CFS do not fulfil any criteria for psychiatric
disorder and that (quote) “any simple equation of CFS with psychiatric
disorder is thus erroneous” (chapter 7:7.6)
We asked where is the published research evidence since 1996 that enables the
same psychiatrists now to claim that apparently 100% of ME/CFS patients
suffer from a psychiatric disorder that must be “treated” by coercing them into
changing their (correct) belief that they have a serious organic disorder?

Conclusion

In a central page spread in the current issue of the Times Educational

Supplement (5th November 2005) David Newnham provides an in-depth article
on ME/CFS, pointing out that of the estimated 240,000 sufferers in the UK, an
increasing number are children, some as young as five; he points out that 80%
of affected children will fall behind with their studies and may drop out of
education altogether; he also points out that only a small percentage of
sufferers return to normal health and that many sufferers never recover.

Newnham quotes two parents: one mother said her daughter became
“bedbound, cannot swallow, cannot open her hands, cannot move her feet apart,
cannot turn in bed, cannot turn her head, doubly incontinent – totally
dependent”; another girl had been very active but on becoming ill “went
through a stage where she felt really dizzy, as though on a boat…the rooms
used to go totally black”; the girl’s speech became slurred and she felt so sick
that she was barely able to eat.

In a paper just published (Am J Occ Ther: 2005:59:497-506), the author is

blunt: “The social model of disability has had a major influence on
contemporary understandings of the causes of disability. The purpose of this
study was to examine the adequacy of the social model for explaining the
disability experience of persons with chronic fatigue syndrome”. It concluded
that it is important to recognise that the social model of ME/CFS as promoted
by currently dominant concepts may not capture the full reality.

On 7th October 2004 Professor Charles Lapp was the contact person for a press
release of the AACFS; the press release was unequivocal: CDC researcher Dr
William Reeves, Chief of the ME/CFS research programme, reported that
ME/CFS patients are more sick and have greater disability than patients
with chronic obstructive lung disease or cardiac disease, and researchers
found that the strongest predictor of the development of ME/CFS is the
severity of the acute illness at onset, and that psychological factors played
no role.

We suggest that Inquiry members look at our document entitled “Quotable

Quotes about ME/CFS”
of 17th July 2004 (available online at http://www.meactionuk.org.uk ), just
some of which are provided here (all are from experienced medical
professionals and all are fully referenced):

1956: “In nearly every patient there are signs of disease of the central
nervous system”

1989: “Many of the immunological and physical features cannot be

explained by mental illness”

1989: “The disabling weakness and exhaustion a patient with ME/CFS

experiences is so profound that “fatigue” is probably an insult”

1990: “The results suggest that ME/CFS is a form of acquired

immunodeficiency”

1991: “The most compelling finding was that the NK (natural killer) cell
cytotoxicty in ME/CFS was as low as we have ever seen in any disease.
This is very significant data; ME/CFS patients represent the lowest
cytotoxicity of all populations (including HIV AIDS) we have ever studied”

1992: “Patients with ME/CFS may have been experiencing a chronic,

immunologically mediated inflammatory process of the central nervous
system”

1992: “ME/CFS has an organic basis; it is not a psychiatric illness” (CDC

Surveillance Study)

1993: “The worst cases have both an MS-like and an AIDS-like clinical
appearance. The most difficult thing to treat is the severe pain. Most have
abnormal neurological examination. 80% of cases are unable to work or
attend school. We admit regularly to hospital with an inability to care for
self” (Testimony before US FDA Scientific Advisory Committee)

1995: “In my experience, ME/CFS is one of the most disabling diseases that
I care for, far exceeding HIV disease except for the terminal stages”

1999: “The most important thing is not to have (patients) do aerobic

exercise. I believe that even progressive aerobic exercise is counter-
productive. If you have a defect in mitochondrial function and you push
the mitochondria by exercise, you kill the DNA”

2001: “In ME, there are chronic sequelae which may affect the
myocardium”
2001: “ME/CFS is as disabling as lupus, multiple sclerosis and rheumatoid
arthritis. Three quarters of medical professionals responding to the survey
believe that it is as or more disabling than other chronic diseases”

2004: “There is no word in the English lexicon that describes the lack of
stamina, the paucity of energy (and) the absolute malaise that accompanies
this illness”.

Despite all that is known about the disorder there is no provision of care
throughout the NHS for patients with authentic ME/CFS: many have been
abandoned, denigrated and dismissed; benefits have been withdrawn and
patients left without the essential support and care they need.

What is so appalling is that this is not ignorance, but the deliberate and
determined suppression by Wessely School psychiatrists of the available
medical and scientific evidence that has demonstrated organic pathology in a
very serious and complex disorder.

As Dr V Rippere wrote in the Journal of the Royal Society of Medicine

(1992:85:59): “It is worrying that many neurological patients may be relegated
to the disadvantaged status of ascribed mental illness because of systematic
abuse of the doctor’s diagnostic authority”.

It is time that a Parliamentary Inquiry held to account those responsible for this
systematic abuse.